Sibaleni Nathi Count Us In Volume 10 - 2014

Sibaleni Nathi Count Us In

Volume 10- 2014

Dssa Contact Details:

Tel: 0861 369 672 Email: dssaoffice@icon.co.za Website: www.downsyndrome.org.za

Like our Facebook Page: Down Syndrome South Africa Stay up to date with latest news and events

Message from Chair nalism and also have a Bachelor of Communication degree and currently completing a Masters of Business Administration.

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llow me to introduce myself. I am Thabang Chiloane a father of a beautiful, entertaining and charming young man called Thapelo.

Thapelo (whose name means prayer) is now four years old. I became involved with our local DSA in Pretoria and was elected as the National Chairperson of DSSA in June 2013. I am a Divisional Executive for Nedbank’s Group Public Affairs and fulfill the critical role of managing stakeholder relationships specifically in the public sector space. I graduated from the Argus School of Jour-

Most of you who are reading this magazine are impacted

by Down syndrome. Over time many people with this condition have been called many different things, most of which were denigrating and out rightly unacceptable. The society has treated - to a greater extent still treats - people with Down syndrome worse than they would treat aliens from another galaxy.

We are connected by the ideal of making this a slightly better place for our children and those that we love who have Down syndrome. That is my ideal, as chairperson of Down syndrome South Africa.

A word of thanks I wish to express my thanks to

Vanessa and all the DSSA members of board and other members for your selflessness in ensuring that parents like me can also see that there is hope for the future. We must never stop having a dream for our children.

We must never stop supporting their dreams of a better future.

We are engaged in a continuous struggle for recognition, equal opportunity and treatment by society. We still have a long way to go, however, we are not where we were before. I am confident that together we will triumph.

Sibaleni nathi, count us in! The struggle continues!

At this point I would like to welcome and introduce the new National Executive Director, Dr Barbara Monyemore. Some of you may remember Dr Monyemore as she was Chairperson of DSSA 1996-1999. We look forward to a fruitful future with her.

Thank you to all our generous Sponsors Down Syndrome South Africa would like to take this opportunity to thank and acknowledge the following companies and individuals for their support during the year. Without this support we would not be able to provide the services that are so desperately needed.

National Lottery Distribution Trust Fund Babli Foundation and the Ramachandran Family Danhauser Inc Chartered Accountants Tradepage (for hosting our website) KARE Staff Members

LEV/DH Denmark Tony dos Santos from Bonfiglioli Casual Day Operation Shoebox

We also receive anonymous donations and thank those who continue to support us on a monthly basis by donating directly into our bank account.

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Sibaleni Nathi - Volume 10

Contents In this edition Sibaleni nathi is a publication of Down Syndrome South Africa (DSSA), which is published and distributed annually.

EDITORIAL BOARD: National Executive Board Members.

DISCLAIMER: The editorial board does not promote or endorse any therapy, treatment, institutions or product, etc. through this publication.

Views expressed in personal stories printed in this publication, may not be those held by the editorial board or by DSSA. Sibaleni nathi aims to report items of interest relating to Down syndrome and other intellectual disabilities, focusing on the vision of DSSA. CONTACT DETAILS: POSTAL ADDRESS: PO BOX 1563 Bedfordview 2008 Tel: 0861 369 672 (DOWNSA) Tel: (011) 616 1458 Fax: 011 252 5323 Email: dssaoffice@icon.co.za Website: www.downsyndrome.org.za

National News Message from Chairperson News from the Editor News from the National Director News from the National Project Manager Awareness & Fundraising Making a Splash

2 5 6 8 10 11

International News Down Syndrome International World Down Syndrome Congress World Down Syndrome Day Inclusion International & Africa

12 13 14 15

Regular Features Education Support Packs Article of Interest Parents Perspective Siblings Perspective Story from Self Advocate Self Advocacy

16 17 20 21 22 24

Branch News Amathole Free State Gauteng Kwa-Zulu Natal Nelson Mandela Bay Support Cape Tshwane Western Cape DSSA Outreach Groups DSSA Contact details

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28 30 32 34 36 38 40 42 44 48

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DSSA T-shirts for sale

Keep calm It’s only an Extra Chromosome

Down Syndrome South Africa are selling “Keep Calm Its Only an Extra Chromosome” t-shirts.

These are available in Children sizes as well as Adult sizes. The cost is R65 per shirt (excluding postage). Please contact Gloria for your order form which you can complete and send back email: dssaoffice@icon.co.za.

DSSA Banking details: Account name: Down Syndrome South Africa Bank: Standard Bank Account Type: Business Account number: 202470695 Branch Code: 018505

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This page is sponsored by: Sibaleni Nathi - Volume 10

Editorial

Message from A

warm welcome to our readers of the 2014 edition of Sibaleni Nathi’s tenth volume.

Down Syndrome South Africa (DSSA) and our branches continue to do amazing work throughout South Africa for people who have Down syndrome also including people who have Intellectual delays as well as their families. For a summary of DSSA’s activities and projects please turn to pages 6-9. A summary of the activities of DSSA Branches and Out-

the Editor

reaches can be found from page 28 onwards.

Last year DSSA were accepted as beneficiaries for Casual Day, we had a relatively good campaign considering it was our first year as beneficiaries.

To read about Casual Day for this year and other fundraising and awareness news go to page 10.

2014 is a year of changes at DSSA, we welcomed Wilna Gates as the National Organisational Development Officer.

After 19 years of being associated with DSSA we say a sad farewell to Vanessa dos Santos the National Director. Her dedication and time which she has poured into DSSA is a testament to the strong organisation that stands today! Vanessa will be missed, but wont be far away for guidance and assistance.

A special mention and thank you to all our sponsors who ensure the work of DSSA is possible.

May the year ahead be a blessed one for you all.

Tiny Handz has grown to be one of the leading training companies in Basic SA Sign Language, .

TINY HANDZ CC presents you with: Training for parents, teachers, therapists, caretakers or anyone involved in the special need down syndrome, cerebral palsy, hearing loss, intellectually challenged, verbal apraxia etc.

Visit for more info and read what others had to say about the training and a variety of success stories! Radio interviews are also posted on our Home Page.

All signs taught are based on South African Sign Language. (8 CPD points apply to professionals) Also on or Website under ’classes’ you can see when we will be in your area. If you are at a school or organisaContact us on e mail for a full list of those all over SA, who have been trained over the last 6 years.

CONTACT MONITA BESTER 08221878339

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National News

National from the desk of the National Director

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t gives me great pleasure to bring you our Magazine for 2014 and the report of activities for our financial year March 2013 to April 2014. During this time I have attended various meetings with other disability organisations, government departments etc… Too many to mention, however I will briefly inform you of the more important ones.

Secretariat of the African Decade for person with Disabilities I attended a two-day meeting for the African Decade held in Pretoria where 13 other Disabled Peoples Organisations from across Africa attended as members of the Decade. We were informed that the African Union has adopted the African Decade of Persons with Disabilities Continental Plan of Action (CPOA). The next step is to ensure the imple-

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Directors News

mentation of the CPOA. Funding from the EU and CBM have been secured for the Communities of Practice in Disability Advocacy for Mainstreaming. The project will include development of a reporting / M&E system for the AU to monitor the implementation of the CPOA and the African Disability Protocol (ADP) and mainstreaming of disability in AU sectorial sectors. These two activities will increase the possibilities of successful implementation of the CPOA and the ADP. International Disability Alliance (IDA) As President of Down Syndrome International (DSi) I represented DSi on the board of the International Disability Alliance. After adopting its new statutes and internal rules, the IDA held its 1st board meeting in New York 13th - 15th July 2013.

The aim of IDA is to promote the effective and full implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD) worldwide, as well as compliance with the CRPD within the UN system, through the active and coordinated involvement of representative organizations of persons with disabilities

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at the national, regional and international levels.

More recently I attended the POST-2015 DEVELOPMENT AGENDA AND THE UN CRPD IN AFRICA – Deepening dialogue between African stakeholders and global and regional Disabled Peoples Organisations (DPO’S) to Strengthen Advocacy for Inclusive Development in Nairobi Kenya 6-8th March 2014 hosted

by IDA. This was attended by 100 persons from across 14 African countries from the various DPO’s.

As a result of this conference the Nairobi declaration was adopted and is accessible on our website.

United Nations Convention on the Rights of Persons with Disabilities (CRPD) - 6th Conference of States Parties to the CRPD The Sixth Session of the Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities (CRPD) took place from 17 to 19 July 2013 at the UN Headquarters in New York. On 16 July, the day prior to the COSP, IDA coordinated the Civil Society CRPD Forum (CSF). The CSF reviewed the negotiation process of the post2015 framework and its inclusion

National News

of the rights and participation of persons with disabilities. Civil society exchanged views with key stakeholders in order to ensure a disability rights-inclusive and CRPD-driven future development agenda. The theme of the COSP was “Ensuring adequate standard of living: empowerment and participation of persons with disabilities within the framework of the CRPD.” The Conference included thematic roundtables on economic empowerment through inclusive social protection; poverty reduction strategies; disability-inclusive development in national, regional and international processes; an informal panel community-based rehabilitation and habilitation for an inclusive society; and an interactive dialogue on the implementation of the Convention.

At the opening of the conference, IDA Chair Mr Yannis Vardakastanis, speaking on behalf of civil society and DPOs in particular, highlighted the importance of mainstreaming disability in future global development goals, noting that this issue currently represents the most important advocacy activity for the disability community worldwide.

United Nations Department of Economic and Social AffairsAfrica Toolkit- Implementing

the Convention on the Rights of Persons with Disabilities I attended the above-mentioned workshop and have given input into the draft toolkit regarding Down syndrome and other intellectual disabilities.

This Toolkit is intended to help governments, national human rights institutions, persons with disabilities and allies to become effective educators and advocates on the human rights of persons with disabilities to advance implementation of the CPRD. and disability and to enable them to share both their passion and their knowledge.

The Toolkit’s content draws on the work of numerous UN agencies and other international organizations, providing useful illustrations and adapting content to meet the specific needs of African country stakeholders, although it can also be used by stakeholders in other regions.

Currently there are 14 modules with a possibility of additional modules being added such as employment. The UN is to come out with a document on National Legislation – it is not a duplication and will draw on existing resources.

These are just some of the more important issues I have been involved in. I’ve further been working on many other issues, which

is reported on throughout the magazine and the LEV project, which is reported on our Project Manager page.

Time to say goodbye I have been involved with DSSA for the past 18 years, first as a committee member and Chairperson of the Gauteng branch and then took over as the National Chairperson of DSSA in 2003. In 2008 if was officially appointed as the National Executive Director. The past 18 years have been an absolutely amazing journey for me. During this time I have met so many wonderful people.

At this point I would like to take the opportunity in thanking all our members and especially those with Down syndrome and other intellectual disabilities for giving me the opportunity of working with you and at the same time learning from you.

Time has come to be at home with my own child who has now finished his schooling years. I however will still be in the backround supporting DSSA and remain as the President of Down Syndrome International until August 2015. I wish you each and everyone of our members all the best of success in your future and hope our paths will meet again. someday.

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National

National News

Project Manager News

from the desk of the National Project Manager

dent. Before joining the groups many parents were mostly isolated and after joining they came out of their seclusion and started to work together for their collective development. By interacting with development functionaries their knowledge improved and they were enabled to access service delivery programmes.

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he paramount first step in advancing towards the vision of an inclusive society for persons with intellectual disabilities and their families is to start listening to their voices and expanding opportunities for inclusive service development initiatives.

The Self Help Groups initiatives undertaken by DSSA branches and outreach groups have been very effective in helping people with intellectual disabilities and their families to come out of isolation and in promoting their participation and inclusion in societal mainstream. The role of Self Help Groups in addressing some common problems faced by members and their families such as lack of awareness about their rights and privileges, absence of livelihood programmes and social discrimination is now evi-

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The DSSA / LEV Break the Barrier – Strengthening the Township Project had a major role to play in this area by further engaging with the branches and outreach groups to create barrier free environments in the communities where people with intellectual disabilities and their families could be supported to develop their capabilities and to lead their lives in dignity. In the third quarter of 2013 the following project activities were conducted with the selected branches and outreach groups.

Networking Between Self Help Groups This activity of the project concentrated on parents from the Self Help Groups coming together to discuss their successes and challenges in the townships.

Six Self Help Groups from three provinces participated in this ac-

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tivity of the project.

In Limpopo the Tzaneen and Polokwane Self Help Groups held discussions at the Reakgona Centre in Seshego. The Eastern Cape groups namely Amathole and Port Elizabeth had their networking meeting in Zwide. The networking meetings amongst these groups took place during June and July 2013. The North West Province networking meeting between the Potchefstroom and Mafikeng Self Help Groups took place in August 2013 in Ikageng.

Reports from these groups have been extremely positive with all the groups saying that they have enjoyed the opportunity to meet other parents and share their stories. Whilst many stories coming from the groups have been similar, there have been some which have been unique. Some of the shared stories related to discovering that the child has Down syndrome; other stories related to worries and concerns about access to education, daily challenges and how to stand up for their children. The parents also shared stories of their brightest moments and how having a child with Down syndrome opened new windows and the world

National News

for them. The parents’ sharings, which run the entire range of different life stages of having a child with Down syndrome imparted a deep understanding of their experiences as well as the emotional depths and terrains of their interior lives as they journey continually in search of a more positive and hopeful future for their children, themselves and their families. The aim of networking was achieved and the groups asked that these sessions must be held annually.

The Self Help Group Workshop The Self Help Group training was conducted on the 3rd October 2013 at the Lower Umfolozi District War Memorial Hospital in Empangeni, KwaZulu-Natal. We had thirty five delegates attending the workshop and only one male delegate participated.

The training was part of capacity building for the Down Syndrome Association Kwa-Zulu Natal branch and an opportunity to reach out to communities in the outlying areas of the province.

The training presented information about Self Help Groups.

The parents learned the importance of their role in developing and how best to run a Self Help Group. The topics covered during the workshop included the basics of Self Help Groups, benefits of participating, keeping the interest and potential challenges in the Self Help Groups. The del-

egates had lots of questions and were interested on learning how to become better advocates for their children. They felt empowered after the training; as they showed signs of reduced anxiety and emotional connection with other participants. They were comfortable to engage with the facilitators and felt that they look forward to future trainings.

DSSA wishes to thank DSA KwaZulu Natal and the staff from the hospital for organizing and assisting in facilitating for the successful workshop.

abilities is important for a number of inter-related reasons; Fathers of children with disabilities are fathers first, and fathers of children with disabilities second.

Many of the issues faced by fathers of children with disabilities are the same as those faced by fathers of non-disabled children.

Fathers and mothers have many of the same needs and concerns, but there can also be real differences in how they respond to their child’s condition, what they do to cope and what they find helpful.

My Dad Takes Part in the Family Workshop “My Dad Takes Part in the Family” workshop was held over two days in November 2013 at the DSSA offices in Bruma. The aim of the workshop was to develop a better understanding of the issues faced by fathers of children with intellectual disabilities and address the fact that in South Africa some fathers due to various reasons are not always involved with their children.

Fathers of children with intellectual disabilities are very involved in their children’s lives and their contribution is valuable, some fathers want high involvement but find this hard to achieve, mainly due to work commitments and other reasons, the needs of fathers can be missed by support services which tend to focus on support for the child and mother, they often have a more limited support network than mothers and see their partners as an important source of support. All the participants were given a mandate to go back to their branches and outreach groups to give feedback that will assist other fathers. They promised to promote the campaign to engage with fathers in their branches and outreach groups.

All the DSSA branches and outreach groups except the Potchefstroom outreach group identified fathers of children with intellectual disabilities to participate in the workshop. During the discussions it was found that understanding the experiences and addressing the needs of fathers of children with intellectual dis-

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Awareness & Casual Day 2013 We were invited by Casual Day to be National Beneficiaries in 2013.

We participated in our 1st Casual Day event, which took place on the 6th September last year. The theme for this day was “Go Big” which saw us dressing up and bugging people all over to go Big with us and pay their R10.00 for a sticker. We were really happy that all our hard work for our 1st year paid off as we received an amount of R191 000.00. We are currently working our 2014 campaign, which is “Bring out the Bling”, and is taking place on the 5th September 2014. Order your Casual Day stickers from us now and support people with Down Syndrome and other intellectual disabilities. Only R10.00 from Wilna at dssa.odo@icon.co.za or 0861369-672

Fundraising National Down Syndrome Day 20th October 2013/Its all in the GENES We once again celebrated National Down Syndrome Day across the country in various ways. We gave several talks on TV as well as interviews on various radio stations. Read each of our branch’s news to see what they did in their areas.

World Down Syndrome Day (WDSD) 21st March – celebrations in South Africa DSSA once again hosted a family fun day held at the Birchwood conference centre where we had games and a jumping castle. 180 people attended and we certainly had tons of fun. The theme for WDSD in South Africa is ‘BE DIFFERENT TO MAKE A DIFFERENCE’

My School Card DSSA have been accepted as MY SCHOOL CARD beneficiaries which is great news for us. Please

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National News

Sibaleni Nathi - Volume 10

if you are not already a My School Card holder or would like to change your beneficiary to Down Syndrome South Africa please log onto our website http://www.downsyndrome. org.za/main.aspx?artid=104 to download the form and sent it back to us. Alternatively phone us on 0861-369-672 or email Wilna dssa.odo@icon.co.za and we will send one to you.

Momentum 94.7 Cycle Challenge More great news is that DSSA have also been accepted as a Charity of the Momentum 94.7 Cycle Challenge. If you or anyone you know are interested in Riding for a Purpose please think of riding for Down Syndrome South Africa. Log onto our website for more information http://www. downsyndrome.org.za/main. aspx?artid=72 or phone 0861-369-672 or email Wilna on dssa.odo@icon.co.za

National News

Making a Splash W

hen you ask Jennifer Higgins - who has Down syndrome- how many medals she has won she answers simply - “Lots”. What an understatement - she has collected numerous medals at different swimming events over the years, most of them earned at the Down Syndrome International Swimming Organisation (DSISO) Championships. She has attended all of them: England, South Africa, Ireland, Portugal, Taiwan and Italy as well as part of the Special Olympics swim team in Ireland and Shanghai. Jennifer holds 11 World records (four short and seven long course) and is currently the top female swimmer who has Down syndrome in South Africa.

Oh, and this slightly built women swims the Midmar Mile every year, having completed 10 so far! To say that her parents are proud of their daughter would also be something of an understatement. “Jen has loved the water since she was a baby”, says Barbara. “She had no option really as her two brothers enjoyed swimming, so she was water safe by the age of five. She was born with a severe heart defect (common for persons who have Down syndrome), and had major heart surgery at just seven months old.

She still has a slight heart murmur but this has not affected her swimming. Jen started com-

Article supplied by the ridge magazine written by Lee Currie peting at the age of 18 and her greatest asset has been the fact that she’s very competitive!” says Barbara. A special aspect of Jennifer’s travels is that she gets to meet swimming heros like Chad le Clos.

“Her articulation is very poor - which she is aware of as she understands everything - so we were all particularly proud of her at the KZN Sports awards when she took the microphone and gave an acceptance speech,’” says Barbara.

day - two hours in the morning and two hours in the afternoon.

“Jennifer has done extremely well both locally and internationally says her swimming coach Jean Norjie. “Each person with a disability is different, Down syndrome athletes have physical as well as intellectual disabilities and require training specific to their needs. Parent encouragement is very important, they need to give disabled children the same encouragement as they would able-bodies kids.

Given the opportunity and the confidence they can become the best.”

Jennifer is fortunate that her parents and her coach have played a major role in her phenomenal achievements. Barbara admits that everything revolves around her swimming when preparing for championships. “I am her taxi driver,” quips her father Harry. It’s obvious though, that he is every bit as proud of her as his wife.

“Dynamites comes in small packages” he says of his daughter.

When training for competitions, Jennifer swims for four hours a

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International News

Down Syndrome

International News

D

Si’s mission is to improve quality of life for people with Down syndrome worldwide and promote their inherent right to be accepted and included as valued and equal members of their communities.

DSSa’s National Executive Director, Mrs Vanessa dos Santos is the current President of DSi (2012 – 2015). Vanessa has been a member of DSi since 2002. Her 19 year old son has both Down syndrome and cerebral palsy. Since her appointment as President, Vanessa now represents DSi on the board of the International Disability Alliance, which is the only cross-disability international organisation that has direct links to the United Nations.

DSi employed Ms Roxanne Scholtz as the Assistant Director of DSi as from June 2014.

Although the main office and Director Andrew Boys, is based in London UK, Roxanne is based in the DSSA offices in Johannesburg. Some of you may remember Roxanne (also known as Roxy) as she worked for DSSA as the Organisational Development

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Officer 2010-1013. Roxy is mostly responsible for building the membership of DSi and we are happy to report that membership has increased significantly from the four corners of the earth since she was employed.

She further has been working on developing the online forums of which DSSA qualifies as “Representative Member”, being a National umbrella body and member. This means that we are able to participate in the various online forums such as the World Down Syndrome Day committee, the Outreach committee, and the World Down Syndrome Congress committee. As a member we are able to advise the DSi board about strategy amongst other issues.

Other online committee’s are the Persons with Down syndrome committee, which advises the Board on all aspects of its strategy, with specific focus on determining how DSi’s current and future activities are relevant to persons with Down syndrome.

This committee is open to persons with Down syndrome who are representative members (this person is selected by the National Representative Organisation to represent persons who have Down syndrome from that

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specific country). The Scientific Committee advises the Board on all issues concerning the field of research related to Down syndrome, reporting on research news and updates, fostering good communications with other Down syndrome research groups, exploring the idea of a publication on research and advocating funding for research projects where appropriate. This committee is open to members who work in the field related exclusively to research related to Down syndrome.

Apart from the online committee’s and working on those strategies, DSi also organises World Down Syndrome Day (WDSD 21st March Annually) which consists of the following: t WDSD Awards; t WDSD congress at the United Nations; t Theme and video for WDSD t Lots of Socks campaign; t WDSD website for members to upload their events and stories.

To learn more about DSi log onto their website at www.ds-int.org

International News

WDSC 2015

World Down Syndrome Congress

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own Syndrome International with local hosts India Down Syndrome Federation is delighted to welcome you to participate in the 12th World Down Syndrome Congress in Chennai, India. We look forward to welcoming participants from countries across the globe to meet, share knowledge, experiences and perhaps open new frontiers in improving the lives of persons with Down syndrome.

India, Chennai August 2015

the art sessions and workshops by international experts who will be addressing topics such as social inclusion, rights, education, health and employment.

Running in parallel with this programme, people with Down

The Congress will focus on Panchtatvas - Social Awareness & Self determination, Health, Education & Employment, Support System, Rights and the Law for people with Down Syndrome. As this is the most important event on the global Down Syndrome calendar, we are putting together a dynamic scientific and social programme which will cater to the needs of all delegates – including health, educational, and research practitioners, policy makers, families and most importantly, persons with Down syndrome.

syndrome and their family members will share their knowledge and experiences in concurrent sessions.

The scientific programme will feature keynote lectures, state of

The exciting social programme will include a special dinner ex-

clusively for people with Down Syndrome.

Following on from the Conferences held in Cape Town and Dublin, we will continue with the successful and popular interactive workshop for adults with Down syndrome. Called PANCHAYAT, this pre-congress open forum has been developed especially for adults with Down syndrome.

It provides a platform for voicing wishes and desires, exchanging ideas, and forming friendships.

Chennai is a vibrant, colourful, affordable and friendly city with thousands of years of culture and history that will provide an incredible location for what promises to be a truly unique triennial congress.

For more information about the congress and updates please visit their website: www.wdsc2015.org For more information about Chennai and India, visit http:// www.incredibleindia.org

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WDSD 2014

International News

World Down Syndrome Day

21 March 2014

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anessa dos Santos (President of Down Syndrome International), together with Thenjiwe Ndebele (Chairperson of the Self Advocacy Movement of South Africa) gave a presentation at the UN Headquarters on World Down Syndrome Day (WDSD) 21st March 2013.

The theme for WDSD 2014 was “Health and Wellbeing – Equality and Access for all”. This is in line with Article 25 of the UN Convention on the Rights of People with Disabilities.

According to the 2011 World Report on Disability, many people with disabilities have “unequal access to health care services and therefore have unmet health care needs compared with the general population” and “increasing evidence suggests that, as a group, people with disabilities experience poorer levels of health than the general population. They are often described as having a narrower or thinner margin of health”.

All people with Down syndrome have the right to access healthcare when required on an equal basis with others without discrimination and with proper assessment of the specific health

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needs of the individual.

People with Down syndrome often face challenges with respect to healthcare ranging from being denied or delayed access to healthcare, incorrect diagnoses due to lack of knowledge or inadequate training, negative at-

titudes and assumptions that conditions are attributed to the Trisomy 21 diagnosis, refusal to allow patients to participate in decisions and treatment plans, and lack of respect for an individual’s basic human right to good health and wellbeing.

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The Conference provided an opportunity for speakers to share experiences from around the world as well as hearing from people with Down syndrome as to what they want from health care providers, amongst others.

It further will help to realise the rights of persons with Down syndrome and other disabilities to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability, as recognised by Article 25 of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD).

Don’t worry if you missed out on attending this conference in person or on web TV. Log onto: http://webtv.un.org/meetingsevents/watch/health-and-wellbeing-–-access-and-equality-forall-on-the-occasion-of-worlddown-syndrome -day-paneldiscussions/3389909361001 Thenjiwe’s speech is the last speaker of the day before the closing.

You can also download the speakers presentations at : http://www.ds-int.org/wdsdconference

International News

INCLUSION International Inclusion International and KAIH (Kenya Association for the Intellectually Handicapped) are pleased to invite you to Inclusion International's 16th World Congress: A Better World for All- No one Left Behind to be held at the KICC (Kenyatta International Convention Centre) on 10 – 13, June 2014, in Nairobi, Kenya.

A Better World for ALL invites families, people with intellectual disabilities and partners and allies to be part of a dialogue about ensuring that people with intellectual disabilities and their families are not left behind in the post-2015 development agenda.

A Better World for ALL will be an opportunity to shape inclusive approaches to international cooperation and development that reflect the UN Convention on the Rights of Persons with Disabilities.

Focused pre-conference events and sessions will explore: Leaders for Change – renewing the family and self-advocate leadership in our movement; Partners for Change – strengthening partnerships with other disability groups, governments and policy makers; and Practices for Change – exchanging good practices in different countries/communities A Better World for ALL will host two leadership summits on 10 June, 2014 as a pre-congress event to the World Congress.

by 31 March and save $100 per delegate http://inclusion-international.org/world-congress/

& Inclusion Africa

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he Post 2015 Development Agenda and The Convention on the Rights of Persons with Disabilities in Africa - Nairobi, Kenya 6-8th March 2014.

Deeping Dialogue between African stakeholders, Global and Regional DPO’s to strengthen Advocacy for Inclusive Development.

This 3-day conference was organised by the International Disability Alliance together with International Disability Development Consortium and UN Partnership on the Rights of Persons with Disabilities and was attended by DSSA’s National Executive Director, Vanessa dos Santos together with other Inclusion Africa del-

egates. Over 100 delegates from 14 countries in Africa took part in the above-mentioned conference.

The theme of ‘Deeping Dialogue Between African Stakeholders’ was apt as this really gave the attending delegates the opportunity of doing just that. Commissions on various issues were formed and helped in the development of the Nairobi Declaration.

Our Director together with Down Syndrome International representative Ms Hazel Tobedsa and Inclusion Africa representative delegates helped to influence the draft declaration by ensuring that people with Intellectual Dis-

abilities and their families were not left out.

Inclusion Africa maintained a major role in the closing ceremony where Fatma Wangare acted as Masters of Ceremonies where she introduces the Minister of Labour, Social Security and Services and Fauzia Haji officially read out the text presentation to the delegates.

The outcome of the conference the “Nairobi Declaration” can be found by downloading it from our website www. downsyndrome.org.za/main aspx?artid=104 or emailing us for a copy to be mailed by post to you.

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Education Support pACK tending pre-school or mainstream schools and joining in social activities with typically developed brothers, sisters, cousins and friends. Now we are seeing a growing number of children with Down syndrome participating in all of these activities. Changes in education law have given children with Down syndrome the right to full time education.

Why do we need a special education pack for learners with Down syndrome People with Down syndrome have a specific learning style and profile. Parents, Educators and Learners Assistants need to know what these are. This pack will enable you to know what the learning style and profile is, how it effects learning and how best to support the child during his / her school years.

Down syndrome today!

Some of the beliefs that still exist today about children with Down syndrome is the belief that they cannot be educated and there is very little to expect from them except to keep them in institutions where they live their short lives. This belief is beginning to prove people wrong.

A number of years ago there were very few children with Down syndrome who were at-

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We are noticing that, given the chance and support to develop their self-help skills and independence, people with Down syndrome can respond positively to many of today’s challenges in regular schools, colleges and further education, employment and independent living.

The 124 page pack comes in 10 Units and includes topics such as: t 6OJU B *OUSPEVDUJPO UP %PXO syndrome and their specific learning styles; t 6OJU C -FHJTMBUJPO BOE (VJE ance, laws, policies and guidelines, useful reading; t 6OJU o &ò FDUJWF TUSBUFHJFT GPS inclusion such as creating an inclusive school, classroom planning and individual support plans and using additional adult support effectively; t 6OJU o %FWFMPQJOH -BOHVBHF Skills, Language development in Down syndrome, Strategies to promote language, including signing, teaching reading to

Sibaleni Nathi - Volume 10

teach talking; t 6OJU o "DDFTTJOH UIF $VSSJDV lum, planning for differentiation, suggested access strategies; t 6OJU o 3FBEJOH MFBSOJOH UP read and getting started, recommended software; t 6OJU o %FWFMPQJOH 8SJUJOH Skills – Fine motor development and how to develop these skills, reasons for delays, letter formation, writing phrases, alternative methods, developing sentence structure, extending writing, spelling; t 6OJU o "DRVJSJOH .BUIFNBUJDT and Numeracy Skills, developing basic numeracy, maths skills, language of maths, difficulties associated with learning maths, t 6OJU o 1SPNPUJOH 1PTJUJWF #F haviours and Social Skills, Behaviour, strategies, causes of inappropriate behaviour, promoting social inclusion; t 6OJU o 4VDDFTTGVM 5SBOTJUJPOT Starting school, moving from pre-school to primary, transition from primary to secondary and high school; t 6OJU o $PNQVUFST BT BO BJE to learning, computers and the curriculum, advantages, computers in school and children with Down syndrome and useful websites.

Contact dssaoffice@icon.co.za or 0861-369-672 for more information or to order your Inclusive Education Pack.

Article of Interest

dOWN SYNDROME Taken from the blog website ‘Patheos’ by Amy Julia Becker Oct 3, 2013: Recent conversation about potential new treatments for people with Down syndrome and the possibilities, problems, and questions those treatments raise, I thought it was important to offer a summary of the research and its implications. To that end, I asked Dr. Faycal Guedj, a researcher at Tufts University who has been working on these new treatments, to provide an overview. Dr. Guedj also has a 25-year old sister with Down syndrome, so he approaches the subject from both a clinical and personal perspective. . We’ve heard from Rachel Adams, who wrote about The Damaging Language of “Cure” and Down Syndrome. Although Dr. Guedj does not use the language of cure, he does offer a different perspective than Adams. My questions to Dr. Guedj appear at the end of this essay. Now, Faycal Guedj writes: Fifty years after the discovery of the chromosomal origin of Down syndrome (DS) as being the presence of three copies of chromosome 21 (HSA21), lots of mysteries around the pathophysiololgy of this disease have been uncovered. During this period, DS research went through three major steps: 1) The identification and sequencing of HSA21 genes; 2) The creation and characterization of mouse models to study these genes; 3)

Towards A New Research Era & Effective Therapies The development of therapeutic strategies mostly to improve cognition in young adults. In the year 2000, the sequencing of the HSA21 was completed and close to 250 genes were identified. Understanding the role of all these genes individually is a major challenge and hardly achievable, however, the presence of rare cases of partial Trisomy 21 led to the discovery of candidate chromosomal regions containing a small number of genes strongly associated with some DS phenotypes. The first region called DS critical region (DSCR) contains 20 genes responsible for the cognitive delay and the craniofacial features of DS. The second region or the DS congenital heart defect region (DSCHD) contains 33 genes, and includes the DSCR. At the same time, technical advances in genetic manipulation of mice have had a great impact on the achievements of the DS research community in the last two decades. We took advantage of the similarities between the human and mouse genomes to create several mouse models carrying a trisomy of either a single gene such as DYRK1A, SOD1, APP (monogenic models), or chromosomal regions (partial trisomy models), including the Ts65Dn and Ts1Cje models. These models contributed enormously in

increasing our knowledge of the cellular and molecular origins of different clinical traits of DS, and still offer the most reliable and effective systems to test therapeutic interventions before proceeding to human clinical trials.

To improve cognition in DS, researchers have chosen two major therapeutic strategies.

The first strategy targets single candidate genes like Dyrk1A using specific a non-toxic inhibitor (Epigallocatechine gallate or EGCG, a green tea polyphenol).

This approach gave very promising results in the mouse and led to a pilot clinical trial. The second therapeutic approach aims to normalize the imbalance observed in some networks affected in the brain of DS patients, including oxidative stress, GABA transmission, serotonine and acetylcholine networks as well as neuroinflammation. Around 20 molecules were tested on the Ts65Dn mice, and most of them were reported to significantly enhance learning and memory in this model.

Despite the positive effects in the mouse studies, a very limited number of human clinical trials were conducted mostly on young adults with DS. Piracetam, donepezil and rivastigumine (three of them target acetyl

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Article of Interest

choline pathway), memantine (targets neuroinflammation and NMDAR), vitamin E (targets oxidative stress), folinic acid and growth hormone failed to significantly improve cognitive performances in double-blinded clinical trials. More recently, a pilot clinical trial using EGCGrich green tea extract (inhibitor of DYRK1A) demonstrated that treated individuals have higher accuracy in visual memory recognition and spatial working memory, suggesting a positive effect of this compound both on the hippocampal and prefrontal systems. A larger (130 affected young adults) and more sophisticated clinical trial is being conducted in France and Spain to confirm this therapeutic benefit of EGCG. Now, what future for the DS research in the next 10 years?

The recent development and clinical use of non-invasive prenatal testing (NIPT) techniques will probably impose a huge shift in DS research towards a prenatal treatment approach. It is well established that DS is a developmental disease and most its clinical manifestations are emerging during fetal life and shortly after birth until childhood. An early diagnosis of Trisomy 21 with NIPT (10 weeks of gestation) offers a tremendous opportunity to intervene in utero using safe and well-designed therapeutic strat-

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egies that will potentially lead to a very significant, which is not to say a complete, normalisation of brain development and cognitive outcome in newborns and children affected with DS. In such an approach, three major challenges emerge in identifying compounds that (1) are safe for pregnant women and their fetuses, (2) can cross the placenta to achieve therapeutic levels in the fetus, and (3) show evidence of clinical improvement after birth.

A new era has started in DS research: Multidisciplinary teams need to be formed with a combination of geneticists, neuroscientists, clinicians, pharmacologist, toxicologist, families and parents advocate groups to resolve these challenges, and get the necessary expertise and support in order to provide effective treatments and guidelines to the national and international DS community.

In the Mother Infant Research Institute (Tufts Medical Center, Boston), we started, with Drs. Diana Bianchi and Tomo Tarui, a multidisciplinary collaborative effort that brings together the wordknown expertise of Dr. Tarik Haydar (Boston University, Boston), Dr. Jeroen Pennings (National Institute for Public Health and the Environment, The Netherlands)

Sibaleni Nathi - Volume 10

and Dr. Donna Slonim (Tufts University, Boston) to develop effective prenatal treatments using a rigorous approach. We combine the study of human amniotic fluid and amniocytes obtained from DS pregnancies and the brains of several mouse models, including Ts65Dn and Ts1Cje to identify several candidate and FDA-approved drugs that will be extensively tested during the next 3-5 years in vitro and in vivo with potential clinical trials during this period.

This collaborative effort will need an important financial support by the DS community, foundations and public health funding agencies, and could be translated to develop therapies for other conditions, including other neurodevelopmental diseases (Trisomy 18, Autism, Fragile-X) and neurodegenerative conditions (Alzheimer and Parkinson disease).

I strongly believe, now more than ever, that the lives of these kids will change for the best, and that humanity will benefit from their high social skills to improve our world.

My final thought goes to my sister, Imene, affected with DS and who is 25 years old: “I wish that you were born just now, your life would have been so different!!!

I LOVE YOU MORE THAN ANYTHING ON EARTH�.

Resources

R

esources available on our website – www.downsyndrome.org.za

Down Syndrome South Africa has several resources such as training manuals and brochures available on our website which can easily be downloaded. If you do not have access to the website please phone the office and we can send these to you by post.

Training materials In support of people with Down syndrome, other intellectual disabilities and their families; t #BTJD 4VQQPSU GPS 1FPQMF XJUI Down Syndrome and Other Intellectual Disabilities - What you need to know; t 1BSFOU 4VQQPSU BOE #BTJD $PVO seling Manual – How to be a parent support counselor; t 1SPNPUJOH BOE 1SPUFDUJOH UIF Rights of Persons with Intellectual Disabilities and their Families; t "EWPDBDZ 5SBJOJOH .BOVBM 'PS Leaders and Support Persons Of Self Advocacy Groups; t .Z %BE 5BLFT 1BSU JO UIF 'BN ily – For fathers of children with intellectual disabilities; t "DDFTT UP +VTUJDF GPS 1FPQMF with Intellectual Disabilities.

Brochures Information on Down syndrome in various languages and guides for health care practitioners, media and family/friends.

Step by Step’ – booklet on Down syndrome for the new parents.

Others Useful Human Rights Instruments t 5IF 6OJUFE /BUJPOT *OUFSOB tional Convention on the Rights of Persons with Disabilities commented by its Protagonists Down Espańa; t 1SPNPUJOH UIF 3JHIUT PG $IJM dren with Disabilities – UNICEF; t 6/ $POWFOUJPO PO UIF 3JHIUT PG Persons with Disabilities – United Nations; Health – We have a number of information booklets on various health care issues relating to Down syndrome under the INFORMATION tab.

App’s Today more and more people are using Apps for iPhone, iPod, iPad and iPad mini’s not only to download music or games but for learning. Children with Down syndrome are often seen using such devices with confidence and enjoying it! Don’t ever underestimate your child’s ability, they may just surprise you and teach you a thing or two!

There are literally hundreds to download for FREE.. Keep on checking out the App store as sometimes these Apps are available for free. However not all

things in life are free. Here are some App’s, that you may want to download but can be quite costly!

Proloquo2Go – An augmentative and alternative communication (AAC) app. For individuals who cannot speak at all. Proloquo2Go’s unique features make it the premier Augmentative and Alternative Communication solution for children, teenagers and adults who need symbol support. Proloquo2Go has been used successfully with individuals with the following diagnoses: autism, cerebral palsy, Down syndrome, developmental disabilities, apraxia, stroke, traumatic brain injury and others.

Proloquo2Go’s unique features make it the premier Augmentative and Alternative Communication solution for children, teenagers and adults who need symbol support. Proloquo2Go has been used successfully with individuals with the following diagnoses: autism, cerebral palsy, Down syndrome, developmental disabilities, apraxia, stroke, traumatic brain injury and others.

(Quite pricey!)

Box of Education – helps children ages 3-8 learn through interactive games, fun facts, pictures and puzzles.

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Parents Perspective

A Fathers Confession

by Thabang Chiloane I am a father of a beautiful, entertaining and charming young man called Thapelo. Thapelo - whose name means prayer is now four years old. We only found out at birth that he had Down syndrome. It was a very difficult journey to travel for both my wife and I. It was particular more difficult for me as after having three daughters, I was looking forward to having a ‘mate’ in my son.

Like most parents, I was saddened and for a long while. I refused to accept that my son had Down syndrome. I was grieving for a son I wished I had and forgot to celebrate the son I had.

He was classified as a child with special needs. I had forgotten that he was alive and still had a lot of life in him. I had to realise that I was missing out on bonding with my son and helping him to fulfill his dreams. I stopped looking forward to a time when he would be old enough for me to teach a lot of things I had said I would like to teach a son I was to have. I had lost hope for the future. More often than not, this is a place where most parents with children who have special needs, find themselves. This is a place of hopelessness. Emotionally, it is a very dangerous and treacherous place to find yourself. I was also there. Had it not been for the constant nudging of my wife and the love I had for my son, even if I

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was refusing to accept his condition, I would still have been stuck there.

Statistics display an unfortunately high number of families that break up due to having a child with a disability because the fathers, in most cases, do not want to handle the fact that they have children with a disability. I thank God and the prayers of many of friends and family members, we did not break up. This is the truth, I was depressed! I was depressed by the fact that the only son I had borne, who happened to be the only grandson on both sides of our families, had Down syndrome. I had mourned instead of celebrating and looking forward to the many happy days that were to follow because I believed the negative information that circulated about this condition. I focussed on my fears and the hardships that we were facing at that time. I lived in hopelessville.

I will not for a moment pretend that it is easy to raise a child with a disability. It is certainly not easy. However, it does not have to be a drudge, as long as we always remember that we are raising people, with a potential to be someone in life. Their wholesome development mostly depends on what we do for them now as they are still young. I accede that severity of the disability differs in

Sibaleni Nathi - Volume 10

severity. That should not automatically exclude them from enjoying life. They are here on earth to fulfil a purpose as much as you and I are. Each one of us has their own purpose to fulfil. It differs from person to person. So the kind of purpose that our children serve in our lives and those of people around them can only be discovered if we stop mourning the children that we could have had. We should rather embrace those that God has given us. In that way, we will stop regretting what could have been but we will find happiness in what is.

I am happy to say that I thank God that he helped me to accept my son for who he is and I am happier now. I have accepted that Thapelo has an extra chromosome that makes him who he is. However, like most children with Down syndrome, Thapelo is the most adorable, loving and content child I know. He fulfills his role of being the son I have always wanted. He challenges me to learn a lot of things. Thapelo’s presence in my life has made me aware of another dimension of life – a life with disability.

There are indeed a lot of challenges that face Thapelo and those like him. That is what I believe is the next frontier in my life. Having Thapelo in my life has challenged me to stop living in the ‘only me’ zone and to start living in the ‘us all’ one.

Sibling Perspective

Living with a family H

aving a brother who has Down syndrome is most definitely not for sissies!

You have to be able to take loads of laughter, tons of love and above all continuous smiles coming your way! What a way to grow up! I can honestly say that having a brother with Down syndrome has made ME a better person. He has taught me patience and love! Unconditional love.

Let me put you in perspective here. He ALWAYS goes out with us when we go somewhere as a family. NEVER has he been left behind, because we are embarrassed by him. When I was in grade 4 he was my show-and-tell at school. I didn’t want to take a puppy or a bird; I wanted to take my brother, because he was special. I mean, come on, he has an extra chromosome! How cool is that?

He would do all things with us like a “normal” child would with his family. Putt-Putt is one of his favourite things and let me tell you, many a times I have had to retreat the loser. He just never gives up!!

For the last 6 months or so Marinus has been working with us here at Ellies on a temporary basis. His job is to put stock into the relative bags before it gets sealed by the next person. Plen-

member who has Down syndrome

by Teresa Moldenhauer

ty of time the sealer has to ask him to slow down as he is working at the speed of light! Those little fingers battle sometimes, but this is what he lives for – to be able to contribute something positive to society. And oh man he does! He has such a sense of loyalty in him for this that we have to fight with him to stay at home when he got sick last year.

All he wanted to do was come to work.

ciety and want to be part of the bigger picture. I sincerely wish that more companies will take the next step in helping them to achieve this. I am proud of my brother for what and who he is.

He does not embarrass me and he never disappoints.

His main concern was that the stock is going to pile up and we (at Ellies) will be behind! He is always willing to help with what is needed to be done. And when he is finished with his work he goes to look for more. What a staff member to have!!!

People who have Down syndrome have so much to offer so-

This page is sponsored by: Sibaleni Nathi - Volume 10

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Story From A Self Advocate

My Visit to New York Written by Susette Brynard and main article by Shéri Brynard

S

héri Brynard is the only South African learner with Down syndrome (Trisomy 21) who has passed a National Technical College Diploma without having been granted any concessions. She sat national examinations, which were marked by nationally appointed assessors. This remarkable achievement earned her a special award

by Motheo College as well as an award from DSSA in 2009. Currently Sheri is also the only qualified teacher assistant with Down syndrome in the world.

Shéri has been nominated as Bloemfontein Resident of the Year twice, a first for a person with Down syndrome in South Africa. She was also chosen by Down Syndrome South Africa as representative of adults with Down syndrome on the Down Syndrome International Board where she serves as international ambassador for all peo-

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ple with Down syndrome in the world. She was also chosen out of more than 1 400 nominations as one of 15 Shoprite Checkers Woman of the Year 2012 finalists.

She went on to win this competition in her category, “Young Movers”, and became the first Shoprite Checkers Woman of the Year with a disability as well as the first winner ever to receive a standing ovation. In 2012 she was auditioned for the television production Binneland, and was subsequently cast in a speaking and acting role. This year she will play a “real acting role” in this TV production again.

She has addressed many conferences, communities and learners in South Africa and abroad.

The highlights of these addresses were when she was asked to be the guest speaker at the nine graduation ceremonies of the University of the Free State, where she addressed more than 20 000 people over three days.

Another highlight was when Sheri had the chance to speak to more than 3 000 in Nelspruit, where the president, Mr Zuma and the ministers attending gave her a standing ovation. Mr Zuma requested to meet her after her speech. A part of this speech was shown on National Television (SABC-News) that evening.

Sibaleni Nathi - Volume 10

In these speeches this Afrikaans speaking woman of 32 informs audiences in English how she grew up as a girl with Down syndrome in South Africa. She explains how her determination to make the best if her situation helped her to cope with her disability and how she, with the help of her parents, handled the preconceived ideas of the people of her time.

A

t the beginning of 2013, Down Syndrome International invited me to deliver the opening speech at a Down Syndrome Conference that was to be held in New York on International Down Syndrome Day (21st March 2013). The Conference was held at the United Nations headquarters.

The big day finally arrived and I was very excited. I put on my prettiest dress – one that my aunt bought for me especially for the occasion. My mom did my make-up and made me look really pretty. I can only thank the Lord that I still have my mom and that she can still share in the special moments in my life – it makes me feel so precious. That day my mom and I took a yellow taxi to the United Nations building and whilst in the taxi I prayed that the Lord would help me to make a difference in other people’s lives,

Story From A Self Advocate

that people might realise that persons with Down syndrome’s abilities are not as limited as they might think. When my mom and I reached the building and got out of the taxi, we were hit by very severe cold weather.

I was wearing my new dress, but I was freezing cold until we entered the building. I immediately went to the room where the conference was to be held, while my mom went to buy each of us a warm cup of coffee. My heart nearly jumped out of my chest from excitement. My mom was very stressed and continually took photos of me. Unfortunately all the photos came out blurry because my mom was too nervous to keep the camera still.

At first after I took my place on stage, I missed my daddy very much. It was hard for me that he could not share in the wonderful moments of my life anymore. But before I started my speech it felt as if my daddy whispered in my ear that he is proud of me and

that made me feel very calm.

I am used to standing when delivering a speech, because I use my whole body while I talk, but at the Conference I had to sit at a long table and each presenter had a microphone that was attached to the table. So I had to sit at the table so I could talk through the microphone. The event was broadcast live on the internet and my words were translated as I was talking. They told us afterwards that nearly 40,000 people watched the event online. Vanessa dos Santos of South Africa, the current president of Down Syndrome International, sat next to me while I delivered my speech. It looked like she was proud of me and that was a wonderful thing to see. I was not scared at all while I talked and afterwards a lot of people came up to me to congratulate me and tell me that they were inspired by my words. A Chinese broadcasting company also conducted an interview with me and I did my best to speak English to

them during the interview. I was very proud that I was able to do that as English is my second language.

This was a wonderful experience which I will never forget!

The following day my mom gave me a big birthday present – she took me for a helicopter ride over New York and the Statue of Liberty. What an amazing experience. That was the best birthday present ever. From the air we could see the Manhattan Bridge and the Brooklyn Bridge and that was amazing. That afternoon, we went to see the show Annie on Broadway. The music, the songs they sang and the dancing was all fantastic. After the show that afternoon, my mom and I were dead tired.

It was a wonderful experience to visit New York and see all the sights – an experience I will never forget. Thank you Vanessa (DSSA) and Andrew (DSi) for giving me this opportunity!

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Adulthood

sELF aDVOcacy

Story by Thenjiwe Thandekile Ndebele - orginal text

National Chairperson of the Self Advocacy Movement of South Africa of DSSA

M

y name is Thenjiwe Ndebele a daughter to my mom Sizakele Ndebele and my late father Themba Gcinikhaya. I was born on the 11 May 1989 at Mary Mount Kensington Clinic, the time was 14:20.

I am the first grandchild to both sides of my family.

prizes and an Eisteddfod competition. I had such fun at this school. We went to different trips every year. We went to Margate which is on the South Coast of Durban. As well as Cape Town and other places. I have all the wonderful memories from all of those trips.

In 1991, I attended a creche at Greenhouse Nursery School in Spruitview on the East Rand not far from our beautiful home for 2 years.

My dad passed away on the 28 December 2003 and this left my family in a very sad state. I loved my dad and still do. He used to call me “My baby” and I would call him “My daddy”. Those were the good old days.

When I was four years old I went to Sunshine Centre in Craig Hall for the next 2 years.

Thereafter I went to Casa do Sol School in Linden, Johannesburg.

I attended at Casa do Sol school from 1995-2010 for 15 years. On the last graduation at the school, I was awarded a trophy as the best overall student for the duration of my schooling.

It was fun and all the attention was on me, everybody was very happy for me as the overall winner.

During my schooling days at Casa do Sol, I won certificates,

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I have a brother his name is Gcinikhaya- Junior. He is now 16 years old. He is in grade 11. I love him and he looks like my dad and my mom. I call him “Fana” which in English is translated to “naughty boy”.

I now stay in Cosmo city with my mom, my brother and my cousin Khethiwe.

In 2010, I had my 21st birthday party. It was the best party ever.

We had food, music and partying. I received beautiful gifts from my friends and family. That was the happiest day of my life. It felt like my wedding.

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Thenjiwe Chairperson and Kagiso Vice Chairperson In 2011, I started attending the Workshop at Novalis in Linden.

Novalis is a nice place for adults as I am now an adult. On Wednesday’s, I go to the Bakery at BP in Malibongwe where I work the entire day.

In 2013, I was chosen as the Self Advocacy Chairperson to represent people who have Down syndrome on a National level.

Since then I have attended different functions and I love being part of Down Syndrome South Africa and Down Syndrome Association Gauteng.

sELF ADVocacy Down Syndrome South Africa conducted a two day National Self Advocacy workshop/training where some 32 people with intellectual disabilities attended - two plus one support person from each branch/support group and DSSA Outreaches.

During this time the Self advocates learned about “What is Self Advocacy”, which consisted of

Adulthood

About Self Advocacey topics on: Self Esteem, What is human rights, Your rights as a person with an intellectual disability, Standing up and speaking for oneself, Advocacy, Appropriate behaviour when advocating, as well as What we want!. This training is so important for young adults with intellectual who want to become a “Self Ad-

vocate” - DSSA is very proud of our self advocates and the high level of participation. Contact your local branch or group if you want to participate in the local self advocacy group. Thanks to LEV - Denmark who funded this project. See Thenjiwe’s story on opposite page to find out more about the chairperson!

Story by Rakgladi Mokgaoko from Pretoria - orginal text I am Rakgladi Mokogo the fourth and last born son of my mom and dad Mr and Mrs Mphephethi Mokgoko. I turned 17 on the 08 January 2014.

I was hosted by the music group called Black Motion at a music gig held at Giant Stadium Sos-

hanguve in Pretoria.

This same music group also visited me at home where they took photos and presented me with a birthday cake which I enjoyed with my family and my close friend Cafu.

Story by Amanda Steyn from Pretoria - original text My naam is Amanda Steyn.

My stokperdtjie is om te borduur.

Ek hou van kruissteekwerk. Dit is vir my lekker om met versillende kleure gare mooi prentjies te borduur. Dit laat my ontspan en dit help my om te konsertreer.

Ek gebruik die kleie prentjies vir om kaartjies en boekmerkies te maak ek gee dit dan as geskenkies aan my vriende en familie.

Ek maak ook plakboeke van die verskillende Afrikaanse sangers.

Dit is vir my baie lekker om van al hul opvoerings en Lewenservaarings te lees, dit brei my algemene kennis baie uit. Ek weet ook wanneer hulle nuwe CD’s en DVD’s om te koop. Dit is drie stokperdtjies is vir my baie lekker en ek hou daar van om my self besig te hou en ek lees graag en ek skryf ook graag en ek wil net se baie dank dat julle vir ons gevra het om te skryf.

Ek waardeer dit baie. Baie dankie.

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sELF aDVOCacy

Adulthood

Follow up story from 2013 Magazine

Written by Adele Grobbelaar, Executive Housekeeper, Garden Court Kings Beach It is such a pleasure to have Michael Steffens as part of my Housekeeping team. He has grown so much in the past two years. His friendly, yet shy personality, has touched all of us.

When Michael started working with us we gave him a buddy to work with, but he has shown so much dedication that he now has his own daily duties. Michael completes his duties with pride and he is always willing to help.

The best time for Michael at work is when he can wear his Spring-

bok Rugby Jersey, and also to be part of welcoming the Springbok players when they come to visit our hotel. We however have a bit of a challenge to get him back into uniform. But that is what makes it so special. Michael is also part of our Housekeeping choir and enjoys every moment of it. My team has accepted him with open arms and he is a pleasure to work with.

Hayley Rehbock Work Story at the Toy Library Cape Townoriginal text records of them and the numbers of the toy they take out, to take home as well and I also make tea and coffee for the mommies and daddies while they wait to see Val and I also wash the toys when they came back and answer the phone to make a date for new mothers and dads to came to the toy library for their new babies and kids as well Hayley Voting in the National Elections 1. I play with all the children with the toys and see how they play with the toys to see how they improve a lot and I write in the toy numbers in a black book to make

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2. The babies and kids there have a disability they also have Down syndrome as well and I also do workshops for siblings of their brother or sister who are Down syndrome as well some times

Sibaleni Nathi - Volume 10

3. I make photocopies as well and I also help Val to see the moms and dads as well same times and to hold their new born babies they trust me a lot 4. I also sit by them to hear what they say about their life as mom with a baby or a child with a disability as well when I have a break I also tell them how I grow up in this world and in the toy library as well know I work here in toy library with Val and Nombeko as well.

Hayley turns 40 years old in 2014.

sELF aDVOcacy

Adulthood

Story by Devon-Lee Blumrick from East London - original text

M

y name is Devon-Lee and I am from East London. I attend McClelland Adult Work Centre- where I work everyday with a group of adults with disabilities who sew beautiful quilts.

I asked my parents if I could stay in the hostel as a border from Monday morning until Thursday afternoon when my parents collect me. The hostel provides me with many friendships with the other young ladies who share my hostel block. We like to chill after work each day and watch our favourite soapies in our communal lounge. Its better to live at the centre as we get ready and walk very close to the centre where we work, whereas everyone else working at the centre has to wake up early and is bussed into work everyday.

On Fridays when I am at home I work as a volunteer teacher assistatant at a school in our area.

I work with the Grade R learners and I really love and enjoy this work.

School finishes at lunch time I then head off to swim with my new friend who is a young adult boy who has Down syndrome, we both attend swimming coaching. I am a strong swimmer but being slighting over weight I am not doing as many things which I enjoyed over the years.

I used to do Modern dancing- I featured with a standard class in two shows, aerobics, hip hop, taebo classes which I loved. I also used to do horse riding.

MON English classes due to me not having enough time, but I hope to go back soon. It has assisted me over the years and I read well.

The highlight of my week is that I am able to attend the choir practice at my hostel for the first time.

I sing around the house with all my papers with the words of the songs on.

I now enjoy doing mosaic and painting and I love activity books.

I have just stopped KUMON Eng-

by Jody Adams from Cape Town My name is Jody Adams I am 21 years old and I live in Cape Town. I have been taking singing lessons with The Sanette Marx School of Music in Kuilsrivier. I starter my lessons at the age of 13 years old.

I have been an ambassador for people who have Down syndrome. The staff of the Down Syndrome Association in the Western Cape often ask me to

go with them when they do talks at schools or other groups, I also sing at Outreach gatherings and functions and also at the Leisure Library “sokkie� evenings. I sing mostly Afrikaans songs. I also performed at the Awareness concert at the Cape Town City Hall.

change attitudes towards Down syndrome.

I hope I touch peoples lives and

This page is sponsored by: Sibaleni Nathi - Volume 10

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Amathole

T

he Down Syndrome Association Amathole was started in 1996 by a small group of parents, Ina Bowes, Judy McKenzie, Barbara Taljaard and Wendy Brent who saw the need as parents of children/adults with Down syndrome to start a support and advice group.

Ina Bowes together with friends of the Bowes family went on to open the Shelley Belles Home in 2009. This home facilitates care of Intellectually delayed adults older than 18 years. It is a private home managed by passionate personnel. The daily workshop offers various activities like exercise, creative and academic activities, outings, gardening etc. It operates from 8am – 15h00 during the week and participants are encouraged to develop to their full potential. The days are structured in a meaningful

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way and it is also a time to build friendships. They hope to open the hostel facilities for girls before the end of the year and a hostel for boys as soon as they can find a suitable house. At the moment there are 3 boys/men and 3 girls/women and 3 more can be accommodated. The boys and girls spend happy and meaningful days at the home and they live a life worth living while parents get a much needed break. If you wish to know more about the home please contact Ina Bowes 083 218 1540 or Sharon Delport 083 468 0820.

DSAA has experienced yet another challenging year where we have learnt and grown. That would not have been possible without the help of Denise Taylor our Branch Director. Denise is one of a kind. Her dedication stretches far beyond the call of duty where she puts in many extra hours even on weekends.

With the support of a very willing, dedicated committee, we are reaching new heights by creating awareness and society is becoming more aware and accepting of people with Down syndrome and other disabilities.

This would not have been possible without the ongoing support and donations from members of the public, businesses, schools,

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E.L. Golf Club, Hamilton Club, Old Selbornian Club, Osner Hotel, The GO & Express and radio stations LINK FM, Mdantsane FM, Izwilethemba FM, Mrs. Pat Martin for your kindness and support by providing us with office space and Vicky Luff for organising the different dance groups and their support over the years. A special mention to Teresa Moldenhauer from ELLIES for everything they do.

DOWN SYNDROME AMATHOLE THANKS YOU FOR YOUR SUPPORT! Fundraising Our fundraising for the year started off with our annual Street Collection on the 2nd March 2013 with the help of friends, family and the general public.

Another exciting event was the DSAA Annual Golf Day which was held at the E.L. Golf Club on the 20 July 2013. Being at the Golf Club before sunrise and watching the players arriving is always a start of a great day. The support and friendliness of the golfers and staff during the day and the excitement at the prize giving makes it a fundraising event to look forward to.

November the 7th & 8th both Down syndrome and Autism were approached to have a combined workshop with the Province of the Eastern Cape This page is sponsored by:

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Amathole wors rolls & cakes and were all wearing DS shirts/T-shirts.

On Monday the 21st the Grens Primary School went all the way in celebrating National Down Syndrome Day. Thanks go to the principal, Mr. Jan Brand and Mrs. Riana Swanepoel.

Social Development & Special Programme. Interest was shown by those that attended and possibly there will be further workshops with both parties at a later stage as they all see a need for educating people on the various disabilities.

October/November 2013 is a busy time for us where we create Awareness around National Down Syndrome Day which is celebrated on the 20th October each year and do various awareness campaigns around East London. We use this opportunity to have Radio interviews and also approach schools and businesses to support us by purchasing stickers and creating awareness.

On Saturday 19th October the DSAA members were outside Builders Express selling boere-

Saturday the 26th October 2013 the DSAA Awareness Tea was held at the Osner Hotel for the first time and what a treat it was with a great venue and very professional staff. This year we raised more funds than any other year.

Each year the hostesses blow our minds away with their creativity in decorating the tables and not to forget the delicious eats! Then there are our generous sponsors.

Thanks to each and everyone who made it possible.

ONGOING PROGRAMS Exercise/Dance Class The end-of-year Christmas party took place in early November for our last planned exercise/ dance class for the children and a Christmas Party without our one and only Father Christmas, Haldane Cunningham is not possible. The venue Hamilton Club was just perfect with lovely music supplied by Pieter du Toit who also had the children doing some karaoke.

teachers from Khayalethu School for their ongoing support and commitment to the children and Down Syndrome Amathole.

Outreach Our Outreach Program should reach as far as Umtata, Queenstown, Stutterheim, KWT, Mdantsane and Parkside.

Deborah Noble is our newly appointed Outreach co-ordinator and can be found on the 3rd floor at FRERE HOSPITAL on Wednesday mornings and also does home and clinic visits.

Self Help/Support Group Mavis Buya has been running a Self Help/ Support Group from her home where they create beautiful crafts. These are usually put on display at the Awareness Tea for ladies attending the tea to see what they are doing and to purchase the crafts. An endof-year Christmas function was held at the end of November at Mavis’s house for her support group which was well attended and enjoyed by all.

We at the Association would like to encourage parents to not lose hope but seek guidance from the Down Syndrome Association Amathole.

We would also like to thank the Principal Mr. Mdikane and the

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fREE sTATE child with Down syndrome.

Awareness National Awareness Day On 20 October 2013 at a Mall in Bloemfontein, 400 pamphlets were distributed. The public responded positively. The parents were enthusiastic and this experience will be followed in future.

Radio Interview

I

t is exciting to know that the FS group is now 10 years old.

We have the status of a branch since June 2013.

Committee members: Chairperson: Jacob Matras Vice- Chairperson: Niklaas Arangies Secretary: Dorothy Russell Treasurer: Ansie Steele (nominated) Office: Aletta Erasmus Additional Members: Rebecca Mosina and Magdaline Nkate Early Intervention The Developmental Resource Stimulation Programme (DRSP) group consists of 34 children that visit the Bloemfontein Child Information Centre every second week. This group grows and parents support each other with the day to day issues of having a

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Jacob Matras our chairperson shares his very first Interview on the Lesedi FM National Radio Station.

“The Radio interview with one of Lesedi FM radio DJ went very well and I was really happy about it, because I know that I have made someone aware about Down syndrome who was ignorant. This interview was at 12pm and hopefully the next time will be during the day. He posed five questions in this interview.

The very first question was what the aim and objectives of this newly established branch in the Free State was going to be? I was confident and answered that we support parents and children with Down syndrome to be able to live a happy and normal life.

I stated that we aim to achieve that the public be award that people with Down syndrome have the right to equal educa-

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tion and to be respected and treated equally within the society. They are also protected by the constitution of the country.

The public in general must understand this syndrome. When it comes to handling of children with Down syndrome, I responded with “handle the person first”.

The reason for this is when you begin with the person it will be very easy to understand his/ her condition. When you start with condition you will basically forget about the person. We encourage public to start with people first and then Down syndrome. On the challenges that parents face on a day to day basis were impossible to prioritise.

What I did answer was the biggest challenge is financial support. We encourage parents to apply for social grants and to be able to get things that are needed and transportation of the children for medical purposes.

The other challenges are access to school especially mainstream schools. Through our outreach programmes we intervene and assist. Our biggest challenge is to get the public aware of Down syndrome to be able to give support to parents with children with Down syndrome. My final question was a message to parents hiding their children with Down syndrome. I always tell parents it is not their fault. If we are Christians and believe that God is the creator of heaven and

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fREE sTATE

earth and everything on it. We should not be ashamed about the blessings that He has given to us. Let them contact branches of Down syndrome for support and assistance. Someone out there understands their frustrations and is willing to help. They are not alone. We are willing to walk the journey with them. Let them come out and we hold the hands together. Our children will become better citizens in this beautiful country of ours.”

Hopefully this interview will assist other new parents and branches.

FS Medical Faculty Students Part of the awareness campaign in the Free State is to be part of a community lecture presented on the 4th of February to 140 third year medical students on parent’s experiences on having a child with disability. Numerous questions are posed to parents

from coping with syndrome to financial challenges. The parents of the children with Down syndrome answer their questions with certainty and passion. The student’s found this the most humbling experience and helpful for future reference.

der the first 3 places in katas for 5 years in a row. In 2010 she went to Netherlands and took part in a competition for mentally and physically challenged people. In total, 14 countries were represented and it was a very proud moment when we saw the South African flag hoisted amongst all the other flags. She got a 3rd place in the competition.

Future Planning An event is planned at Ficksburg that involved horses and endurance races, Eastern Free State for 20 October 2014

Tineke started art classes to express herself as children with Down syndrome cannot always verbalize their feelings. She enjoyed it so much and developed a lot as the many pictures at home shows. In 2012 she won a 1st prize at the Bloem show for one of her pictures.

Self Advocacy Tineke Hattingh is a 19 year old girl with Down syndrome. She started school in 2000 and finished in 2013. She can read and write and do what most teenagers can do on their ipads and cellphones.

She has a very good eye for photography. In 2012 she won a camera at a photo competition at the WDSC. She started doing Judo in 2005 and is now working for her brown belt. She is expected to do what any other judoka would do for their brown belt. She took part in competitions against “normal” children of her age and weight.

She is visually impaired and also competed in the group for visually impaired judokas. At the Judo nationals she finished un-

Currently, she is working in a hair salon for 3 days per week and loves to socialize with other people.

She is a happy, spontaneous person with a good sense of humor and she is very happy to be at the salon. This is also very good exposure for all the clients to get to know our children with Down syndrome and see how well they can cope in life and how versatile they can be.

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Gauteng

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ur AGM took place on 19th September 2013 at our CMI offices. Following meetings held with EmployAbility-Vulindlela (EV) during 2012, they now share our CMI office premises and this closer working alliance has proved of beneficial support, to our Self Advocacy and Adult Support Service programmes.

Outreach Support Services Following a meeting held with Prof. Yengopal and medical team from the Dept. of Community Dentistry; School of Oral Health Sciences & Faculty of Health Sciences - University of the Witwatersrand, many of our members attending outreach support groups DSAG hosts, mainly within poverty stricken areas, have benefited from free dental care.

The continued marginalisation of special needs groups from access to basic oral health care was

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an area of concern to both DSAG and the Dept. of Community Dentistry. It is worrying that no accurate data exists regarding the oral health status of children and adults with Down syndrome.

As part of their undergraduate research program and community outreach program, their Dept. has now teamed up with DSAG to provide a wide range of services. The partnership with Wits will be strengthened by a research agenda which will include areas related to prevalence of caries, determination of oral health status, knowledge and attitude surveys, comparison of oral health status children with Down syndrome, siblings, etc.

Closer alliance established with government hospitals, clinics and Wits have enabled DSAG to assist many of our family members, with free and/or affordable access to medical care

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and therapy sessions for their children with Down syndrome.

Suitable venues, kindly provided at no cost to DSAG within these institutions, have enabled DSAG to initiate additional once monthly parent group meetings, in close working alliance with therapists and other medical professionals, to the benefit of our children with Down syndrome and other intellectual or physical disabilities. In her own words, the following mother describes how much these group meetings have meant to her…

“NONO: At first it is difficult, but as time goes on it becomes better when you meet with other parents and getting help from DSAG. When my friends found out that I gave birth to a disabled child they disappeared. I depended on my family and DSAG for support. The DSAG Support Group gives me healing. Members of the support group become family.”

Outings/Events Our sincere thanks were extended to the Joburg Theatre for their sponsorship of free tickets to our family members, to watch the stage performance of ‘Essence of Ireland’, which they enjoyed and following the performance, had opportunity to meet with some of the cast members.

Our self advocates and some of our other young adult members

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Gauteng with Down syndrome, were invited to a movie and to spend time and have lunch, with some of the cast members from the 7de Laan (television series). The day was thoroughly enjoyed by everyone and of course they LOVED the camera and all the attention.

With thanks and acknowledgment to Dr. Gill Lloyd who kindly volunteered her time as the guest speaker, a parent information morning took place at The Oak Leaf. The topic of presentation was on ‘The Management of Difficult Behaviour in Children’ and was well attended and enjoyed by all present.

Self Advocacy Programme With thanks to NLDTF 2013 approved funding, a further 12 young adults with intellectual disability were identified and are currently in training, to become active and informed self advocates. During 2012/2013, the self advocates decided that they need to be involved in issues affecting communities and especially, cases of abuse and discrimination against people with disabilities. They have actively participated in campaigns organized by these communities i.e.

HIV/AIDS and Domestic Violence and Abuse campaigns. The issue of the young adult with a disability raped in Soweto last year was discussed; and the self advocates identified the need to show support to victims of such crimes. Our sincere thanks were extended to Kirk Walker the M.D. of ‘Staff-U-Need’ for the sponsorship of T-Shirts to our self advocates, which included the DSAG logo and the self advocates adopted ‘slogan’.

With thanks to DSSA, successful self advocacy training workshops were held on 18 & 19 May 2013 and we were delighted and extremely proud to announce, that our two self advocates representing DSA Gauteng, were both elected to the top posts and won the elections, with wide margins. Thenjiwe Ndebele was elected as the Chairperson and Kagiso Nwandula as the Vice-Chairperson.

Kagiso also represents on our committee board of members and is the Assistant Programme Co-ordinator for our 2013/14 self advocacy programme. In November 2013, our self advocates enjoyed travelling on the Gautrain to an outing planned at the

Pretoria Zoo, together with staff members and learners from EV. Funding We take this opportunity to thank and acknowledge the NLDTF, our other donors and family members, for their support this past year. Without this financial support, DSAG would not be able to provide the support services that are needed and make a difference, in the lives of children and adults with Down syndrome and other intellectual or physical disabilities, as well as their families.

Golf Day Ebotse Golf & Country Estate – 16 Oct 2013 With sincere thanks and gratitude to our corporate and individual sponsors and players, our Golf Day was a huge success!

We take this opportunity to also thank and acknowledge our following members, for their much appreciated support: Neelesh Morar & Alex Contomathios; Martin & Liza Koen (Heaven’s Children’s Trust); Nikki Rood; Sanna Matthews; Constance Hlongwane; Cathy Dzerefos; Marius Viviers; Monica Wolfson and Sandy Rademeyer. Tyrone and Sean we thank you for participating at our Golf Day and Auction. Val, Saul & Karen for your support on the day and we thank Petra, for her hard work and attention to detail, in making our Golf day the success it was.

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Kwa Zulu Natal so doubled up quite nicely as awareness and fundraiser.

W

e start by thanking National Lottery and all our sponsors who have supported us throughout 2013.

Thank you for your continued support and for believing in our work, we couldn`t do it without you.

Public Awareness 2013 turned out to be quite a successful and busy year for KZN after a very shaky start. After a near fatal accident to Caroline`s (Branch Co-ordinator) husband in January it looked as if our main fundraiser, the street collection, would not take place. It takes a lot of work and hours to put it all together. Angie (Chairperson) and Barbara (Outreach Supervisor) kindly took over the reins (great team support). Street Collection was planned for around International Awareness Day

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This year we managed to get through all the red tape and get our ‘Buddy Walk’ up and ‘running’. Poor Angie sat for hours at police and municipal offices to get through the paper work. We held it on 20th October. Jennifer Higgins was the guest of honour (she was recently awarded KZN Sportswomen of the Year with a Disability) and she cut the ribbon to get the event started.

We definitely stood out in our yellow T-shirts. Passersby couldn`t miss us.

After the walk everyone enjoyed a small lunch. There was dancing for those who still had the energy. In addition Zulu dancing was organised by Mavis Mduli.

We thought the 500 medals that we were handing out at the end would be more than enough but sadly we were quite a few short.

The ‘Buddy Walk’ is such a popular event.

The Students Organisation of Universal Love (SOUL Group) in affiliation with DSA KZN hosted a Variety Concert. The aim was to showcase the abilities of people with disabilities. The hall was packed and R11 000 was raised.

Thank you SOUL Group.

Outreach Under the supervision of Barbara Higgins our Outreach Pro-

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gramme just keeps on growing.

Servicing the whole of KZN is no mean feat and we are far from having achieved that but we are reaching many rural areas.

Barbara and Dudu travelled to Empangeni, Winterton, Rietvlei, Newcastle, Bethesda, Zululand to name some places. DSA KZN was invited to participate in an “Orientation Workshop” at the Newcastle Hospital.

A LEV workshop was held in Empangeni in October, which was run by Jabu Dikgale from the DSSA office. A total of 40 delegates attended from surrounding areas. Thank you to Sr Sma Nsele for making all the arrangements. Empangeni has been identified as our 2nd area for the LEV Project. Work continues in the Ugu district.

New groups were set up in Cleremont and Stanger and both are running well. Established Support Groups continue to grow,

Kwa Zulu Natal

under the leadership of Dudu Sishe. A new support group is planned to be launched early this year at King Dinuzulu Hospital, Durban.

Outreach Public Awareness campaigns were held at Edendale Hospital, Pietermaritzburg, Port Shepstone Hospital and King Edward Hospital, Durban.

General In keeping in line with the rest of the branches in South Africa DSA KZN adopted the DSSA branches constitution at the June AGM Myles and Morag van Deventer hosted our 10th Pietermaritzburg get together. It is always such a lovely, relaxing day. Can`t believe we have been doing it for 10 years, may we continue for another 10. Thank you Myles and Morag.

DSA KZN started an electronic newsletter which has been very successful. Our Editor, Barbara does a great job. Well done.

Dorothy Russell joined us in November and we held an OT workshop. It was very well attended

by Occupational- Physio- and Speech- therapists. Dorothy`s workshops are very popular here in KZN and always well attended.

Thank you Dorothy for giving us your time.

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gwengwe attended the Father’s workshop.

Our annual Christmas Party was well attended even though it was a wet day and the function was outside. The children enjoyed themselves which is what it is all about. There were some quite muddy looking children there so they were definitely having fun.

Santa was lucky to have Merida (from the BRAVE) and Tinker bell helping him this year. Thank you to Ginelle Willis, Jenna Higgins and Harry Higgins.

There was also a golf day organised on our behalf. It wasn`t terribly successful but did bring in some funds Throughout the year DSSA hosted several workshops. DSA KZN sent Les Perumal on the inclusive educational workshop, Lorraine Khumalo to the self advocates workshop, accompanied by Dudu Sishi and Bonginkosi Mn-

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Nelson Mandela

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handiwe Matomela and Ursula Hendriks are currently our two outreach co-ordinators in the outlying areas of Port Elizabeth. Both of them are extremely motivated, compassionate and are making a huge difference in the society. They are working in very close relationship with Carol Massyn, a cytogeneticist who has run the public / private sponsored Genetic Clinic in the Pediatric Specialist Out-patient clinic at Dora Nginza Hospital (DNH) for the past 7 years. This is jointly managed by DNH staff and Pathcare.

This is the third year of this partnership with PEDSA. This association has been very beneficial to the diagnosed children and to their families to which support can be offered.

Since January 2011 to date, 92 children have been diagnosed with Down syndrome in the Port Elizabeth region. Most referrals originate indirectly or directly from DNH and those children and their families attend the weekly

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Genetic clinic. Referrals come from as far as Humansdorp, Grahamstown and Adelaide. Good support and management to two new families in the outlying areas of Jeffreys Bay and Grahamstown were also offered. The families from outlying areas remain a challenge but many from Umtata, who attend the cardiac clinic on a Monday morning at DNH, now receive education and support on their child’s condition by Thandiwe. They are also shown the benefits that stimulation and exercises may offer.

Schooling Placement of children in appropriate schools remains a huge challenge as good schooling in general is a challenge in many areas. The Department of Education is found to be slow in completing and assessing the documentation required by the schools. In many other cases, it is a case of the schools been full and the waiting lists are long.

Grants Most of our diagnosed families receive the State Care Dependency Grant which has been extended as from this year to families when a child is born (from birth / diagnosed). In the past, the child had to be over one year old to receive this grant. The clinic manages these applications. This is obviously of huge assistance to these families.

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Metropole Fundraisers Our annual cricket day doubled in size, we even had a ladies team! This is a fun day for all and while the adults played their hearts out (and got injured), the youngsters enjoyed the jumping castle.

With the assistance of an event co-ordinator who offered his services to us at no charge, we had a magnificent “Hip your Jeans for Downs� event. Team Garwood (Kevin and Nicholas Garwood www.teamgarwood.co.za) was our guest and they reduced everybody to tears. We were entertained by Hip Hop Dancers and a fashion show in which Mr PE and the finalists participated. Some of our own children also paraded as models. Needless to say, they stole the show!

The golf day drew a lot of interest and we had to move the event to another golf course to accommodate all.

These fund-raisers have accumulated funds which is increasingly making a real tangible difference in the lives of the families of our children who has Down syndrome, who in the past were given a diagnosis and left on their own to manage. A system is in place where these families know

Branch News

Nelson Mandela that some form of assistance and care is available.

We hope to be able to build on this in future years.

Awareness The community radio- and TV stations invited us to make a contribution on their shows. One of our Self Advocates accompanied by his mother, excelled during the interview and made us all proud.

People still have open hearts in spite of the bad economy and both International- and National Awareness Days were well supported. We even got invited to a church sermon on Sunday the 20th of October that was specially arranged to accommodate people with Down syndrome

as well as other disabilities, increased awareness and to portray that people with disabilities are welcome in the Church and the Kingdom of God. Self Advocacy Our Starfish group thrives. They were invited to be Master Chefs and surprised us with their kitchen skills and a lovely threecourse meal. The rugby match we all attended caused disunity and a lot of laughs as we could not agree on which team to support!!

Our monthly Friday evening events are still very popular, to such an extent that the parents use it as a threat and to bribe the members to do as they wish.

Metropole Christmas Party Unfortunately the weather didn’t play along and only a handful of the parents and children managed to attend. This didn’t dampen the spirit. Christmas presents and goodie bags donated by staff of Pathcare Pathology Laboratory were handed out to great excitement of the little ones.

Donated refreshments supplemented those we bought, and all had a feast.

We would like to thank all people and businesses alike, without exception, for their continued support and would like to extend a special word of thanks to Vanessa and her loyal team.

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Support Cape

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our families for leading the way!

We also had tables at shopping malls and at the Red Cross Children’s Hospital.

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ur Toy Library opens every day, except Tuesday mornings which are for our groups. Apart from the toys and books, we have parent support groups facilitated by the Family Counsellors, and Speech Therapy provided by students from UCT. During the past year, the Family Counsellors introduced sibling workshops, for siblings aged four years old to teenagers. Additionally these siblings workshops will be hosted for this new year 2014. Contact the Family Counsellors if you would like more information.

ing that time.

National Down Syndrome Awareness Day The Bonteheuwel Self Help Group organised a walk through the community on 20 October, to raise awareness of children with Down syndrome and other intellectual disabilities. Well done to

Self Help Groups Our Self Help Groups are in Atlanits, Fisantekraal and Bonteheuwel. We try to visit each group once a month, and support groups are held for the parents in that area, while their children are given toys to play with dur-

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Mandela Day We received a surprise donation from five young girls from a school in Pinelands, who decided to spend the weekend making and selling their own cakes, and asking around for donations for Mandela Day. They delivered their gift or R600 in person to the toy library. Thank you Jordan, Naomi, Juliette, Megan and Britney! You are the future leaders of South Africa!

In Memory It is sad to hear of our children as well as one of our parents who passed away, and we offer condolences to their parents and families. This time, we remember: Luve B; Lisakhanya F; Liseko

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Ghansar, Secretary: Faseega Coetzee, Treasurer: Lynne Rutherfoord, Committee Members: Yusuf Davids, Latiefa Davids, Natasha October, Janap Daniels, Vincent Xego, Fatima Oliphant and Farhaanah Ghansar (Self Advocate).

G; Mikhail G; Siyasanga P; Nongamso M; Apelele N and Fatima S. Those we love don’t go away, They walk beside us every day.

Unseen, unheard but always near, Still loved, still missed and very dear. ~ Anon.

{

}

Farewell Madiba We joined the country in mourning the passing of Nelson Mandela on 5 December, the day after our Toy Library Party. Books for tributes and condolences were placed in almost every public place, including the Red Cross Children’s Hospital, for us to add our own messages of condolences. The Staff of DSSC paid a visit to his statue on Nobel Square, V & A Waterfront where we placed flowers. Special Birthdays

The year of 2014 will be one of big celebration for our two Self Advocates. Farhaanah Ghansar celebrated her 30th in February and Hayley Rehbock will turn 40 in October! Congratulations to both our young women, and may you both be blessed with many more happy and healthy years!

Committee Mr Yusuf Davids, having served the maximum terms of office, stepped down from the Chair, We thank Yusuf for his leadership and hard work. We welcome into the Chair, Mrs Meiro Nisha Khan who has already been hard at work.

Thanks and Acknowledgements We thank all who gave so generously of their time, and donated in kind, providing everything from gifts to food and fun for our children to have a Christmas party every year. Thanks also go to the individuals and schools who gave so generously to help us during this year. We appreciate your gifts for our children.

Thank you to the Red Cross Children’s Hospital, the University of Cape Town, The Friends of the Hospital, staff, volunteers, our families, and especially to our babies, children and their parents and families for having blessed us in so many ways again this year.

Committee members, elected at the Annual General Meeting on 21 September 2013: Chairperson: Meiro Nisha Khan, Vice-Chairperson: Koelsum Bibi

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Tshwane ery month and had a chance to create their own Christmas gifts to give to that special person in their life as well as spend an afternoon at the Barnyard Theatre dancing and singing away to the sounds of the 80’s. The Carl and Emily Fuchs Foundation sponsored the Self Advocate project.

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he Young Adults enjoyed various functions that were hosted throughout the year in the form of sokkie evenings.

They concluded the year with their famous year-end function. This function proves to be the highlight of the year for the young adults as this is the only time they get to dress up.

World Down Syndrome Day: 21 March 2013 Over a hundred people participated in the 2013 Health Day in celebration of International Down Syndrome Day. It was held at Maranatha Bana Special School in Centurion. Many specialists were on hand to provide free dental and hearing screening for the children while parents were provided with information on nutrition, genetic screening, educational toys, music therapy and various ailments and conditions that our children with

Self Advocate Group “Voices of the Future”, the objective of the group is to develop essential life skills to enable them to speak up for themselves and to provide them with tools needed to function optimally in society. With the resignation of Petra Le Roux the association is glad to have acquired the services of Miss Annelise Boot to take over as facilitator. The group meets on the 3rd Saturday of ev-

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Down syndrome often experience. Parents were also treated to free massages by the students of the Tshwane University of Technology. The day proved to be a huge success and we are thinking of doing it again in 2014.

Morula Marathon: 20 March 2013 DSA Tshwane partnered with Morula Running Club, Pick n Pay Soshanguve, Tshwane TV to educate the community of Tshwane through a marathon. The event was held in Soshanguve and was attended by over 500 people.

The marathon organizers also donated R5000 to DSA Tshwane from the proceeds of the day.

The event received publicity on Morning Live, Soshanguve Radio and the Daily Sun newspaper. Record newspaper was on hand to capture the handing over of the cheque while parents

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Tshwane for rendering this day a huge success, Horse Worx, Biltong@ ZA, Bronberrick Butchery and Ria Horn.

and children were treated to tea and sandwiches provided by Pick n Pay. Our sincere gratitude to Mr Senosha from Pick n Pay for his selfless service.

Mother/Fathers day celebrations A Special Day for Special Mums; mums were treated to a motivational talk, free facials and a pedicure pamper session. For the first time the association paid tribute to all the wonderful fathers in recognition of their role in D.A.D.S. (Dads acknowledge Down Syndrome) by hosting a braai for them.

National Awareness Day Our 2013 National Awareness Day celebration was attended by 170 people and was held on 19 October 2013 at the Derdepoort Recreation Resort. Families enjoyed the day socializing around the braai, games provided by Special Olympics and pony rides. Thanks to all the sponsors

Art Classes The association started art/creativity classes for children aged 6-17years. This was done to teach the children skills, to give them the opportunity to socialize with other children and for the parents to get to know each other. Wilna Kerkhoff volunteered to present these classes. We had 6 art classes during 2013. The classes were attended by an average of 6 children. They made bees, a basket for Easter eggs, painted a flower and did mosaic. Children and parents enjoyed the activities and the interaction with each other. We want to thank Wilna Kerkhoff for offering her services and The Carl and Emile Fuchs foundation for the donation towards the art classes.

such may be, we shall soldier on.

Topics covered during the year, Parents Expectations, Speech and Feeding Techniques, and Nutrition.

Outreaches In 2013 we started the Masakhane Wheelchair Project, the aim of the project is to seek sponsorships for wheelchairs for children who have Cerebral Palsy. The plight of parents in carrying their children was physically draining and the backlog at provincial hospitals was becoming challenging, it was time to do something. This objective would not have been achieved without the tireless efforts of Louanne van Rensburg, The Rotary Club, The Plaatjies family and Legacy Medical for the sponsorship of 5 wheelchairs.

Parent Information Mornings This is the second year that the Parent Information Mornings were organised. Parent information mornings are hosted every second month. Attendance of parents is often a challenge.

However, we have decided that no matter how discouraging

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Western Cape sible. We also appointed a new office administrator. Amelia Colyn started with the Association in April 2013, she takes care of all the office work, including our finances and she also doubles as the co-opted secretary of the MC, without her assistance and input the Association’s office and MC will definitely not be able to do what we have done. DSAWC is back! We are a team that work together.

T

he year 2013 was a year of new beginnings for DSAWC. We concentrated on expanding our services, by appointing a new Social Worker.

Lungiswa Mhlayimpi started working for the Association in August 2013, she has made the Outreach her own, the parents love her and she has really made a difference in their lives. Her appointment was made possible by funding received from Social Development funding the post. We are in the process of appointing an Auxilliary worker.

The need in the community is so great, and even though we can not possibly meet the need, we can at least assist as far as pos-

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Outreach Esther Adams is our Outreach Co-ordinator, and she goes the extra mile. We have added another Outreach to our long list, we now also have an outreach in Khayelitsha. The Outreaches all had different functions throughout the year. The highlight being a Christmas party for all the children organised and funded

by Donné Woodford, her brother Luwayne, her mother Ronéll and their friends and family. It was a morning filled with gifts, Father Christmas, eats and treats and lots of fun and laughter.

UMTHI SPECIAL CARE UNIT: The Umthi Special Care Unit had a good 2013. We are still receiving funding from the Tembaletu Children’s Fund, this makes it possible for 8 children from Sivuyile Children’s Home to attend the unit. The class is situated on the Stikland Hospital grounds and we partner with the Depart-

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Branch News

ment of Health and the Sivuyile Children’s Home. Reny Mohammed is the class coordinator and is doing a fantastic job. Reny is assisted by Leanne Marsh and Ferial Charles. We are very proud of Umthi and the difference this unit makes to the lives of those attending. We are in the process of registering with the Department of Education. The program has also been underwritten by the CSPID team and the report from them has been more than positive.

Leisure Libraries The Art class takes place every 3rd Saturday of the month. The young adults attending enjoy it tremendously. We are still painting our bags and have now also ventured into peg bags, aprons and tablecloths. We attended several markets with our group, where we had a table and they where painting at the market.

This was a big hit with the public, also creating awareness and showing others what our young adults are capable of when given the chance. The success of the art class would not be possible without all the volunteers doing their bit. To Beulah and Marianne for giving up Saturday afternoons, the volunteers Fiona and Elizabeth who do our stitching, and Marilyn who helps with the drawing of the pictures on cloth. We would also like to thank the group of ladies who

Branch News

Western Cape have adopted the art class as their project and donated bags as well as aprons. Thank you to all of you!! The Sokkie is still one of the monthly highlights on the social calendar. To DJ Jacques a big thank you for volunteering his time and music to make each sokkie special. We ended the year off by having a wonderful Christmas party. All the young adults and their parents where invited, we danced, had a braai and even Father Christmas came to join us.

Early Intervention Workshop An early intervention workshop was hosted by DSAWC. The workshop was well attended and the feedback was very positive. We would like to thank Dorothy Russell for facilitating this workshop for us.

Golf Day DSAWC had our first Golf day in years. To Jan and his team consisting of the office ladies, Marina Wentzel, Llewellyn Kapp and Chris van der Westhuizen we say a warm hearty thank you. We would like all the players, sponsors, donors of prizes, André and his band and Stef Olivier the Auctioneer to know that we couldn’t do it without them. Jus over R 50 000.00 for a first time is FANTASTIC! Annual Dance Our Annual Dance (the first in 3

years) was held in October. Deon of Deon’s Disco was our DJ. The evening was a great success, and even though fundraising was not our first priority with this event we still made just over R 5000.00.

Awareness We try and bring Awareness into every small thing we do. But in October we took part in an Awareness Concert, held in the Cape Town City Hall. Jody Adams, a young man with Down syndrome, sang a few solo songs; Andrea another young man with Down syndrome played the accordion. Special Schools and Mainstream Schools all took part.

Our Leisure Libraries sold their bags and what a hit! The Ceres Outreach also organized a walk and entertainment & games on a sports field in Bella vista on the outskirts of Ceres. We also took part in radio talks.

Board Members elected Chris van der Westhuizen Clint Henderson Vuyiswa Maliti Magdalene Organsie Staff Outreach co-ordinator: Esther Adams Liaison: Tineke Boshoff Class co-ordinator: Reny Mohamed Class Assistants: Ferial Charles and Leanne Marsh Secretary: Amelia Colyn Social Worker: Lungiswa Mhlayimpi Volunteer Staff Art Class: Beulah Matthee and Marianne du Plessis

Cycle Tour The annual cycle tour finished at the Eljada Aftercare Centre in Oudtshoorn on the 28th of February 2014. We would like to thank the Mountain View Cyclists for their willingness, the donors for their open handedness and everyone who contributed helping us to help others.

Committee Members Chairperson: Jan Malan Vice Chair: Dr. Willem du Toit Treasurer: Ingrid de Jager

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Branch News

DSSA Outreach Groups

Northern Cape - Kimberley who made this event a success.

We celebrated 16 days of Activism for No Violence Against Women and Children on the 10th of December. Speakers encouraged silent female victims to challenge abuse and ensure that they get help, to report child abuse to the police immediately, and everyone to speak out against women and child abuse.

T

he Kimberly outreach group celebrated the National Down Syndrome Day at AgtMyl Animal Farm on the 20 October 2013. This event was attended by over 40 people including children and parents. We shared our day to day challenges, and learnt from each other how to manage our challenges. The event was to raise awareness. The theme for the day was JEANS DAY. Kids enjoyed themselves; they played, sang, and fed the animals. It was a memorable day for parents and children. We are pleased that we are growing as a support group and new parents have joined the group. We would like to thank AgtMyl Animal farm for their support, Mr Dolfe a community member for assisting us with transport and everyone

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We held our Christmas party at Ekhaya Guest house in Galeshewe. We were expecting more than 26 children but it rained, so most people did not come but we all had a blast. Kids loved balloons, Christmas hats and face painting. After lunch we handed out the shoeboxes all the kids were excited to receive presents

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and were soon opening them and trying out their new items.

A big thank you to Operation Shoebox we are really grateful.

The children loved their presents.

In 2014 the group continued with their monthly meetings, the coordinator encouraged members to enrol their children in schools and take their children to clinics for monthly therapy and medical treatment. The group celebrated World Syndrome Day over lunch at McDonalds. Over 40 parents and children enjoyed a fun-filled day.

We would like to thank all of our members, friends and family members for their continued support and commitment.

Branch News

DSSA Outreach Groups

G

enes day is a National event which is celebrated annually by all Branches and outreach groups; which celebrates people who have Down syndrome and other intellectual delays. The Mafikeng Outreach group initiated a trip to the Johannesburg Zoo; through the assistance of ATAMELANG BUS SERVICE, under the concept of “Just get out there and be seen”.

The Mafikeng Outreach group wish to thank our DSSA National Director (Mrs V dos Santos) for providing funds for the food and soft drinks for this trip; the Principal and staff are very grateful for the gesture shown by your office and are looking forward to working with DSSA. This trip was a success, the children enjoyed the zoo, I wish to highlight the importance of the message on the t-shirts which were worn by the children; everybody was so impressed and it sent a message to those who do not know anything about Down syndrome.

Christmas Party We celebrated our Christmas party with children who have Down syndrome from Feel at Home Special School; this was on the 07 December 2013. It was sunny and we were sitting outside on the grass. The party started with

a prayer and a Christmas wellwishing message, after those children were given their Christmas presents donated by Operation Shoebox. This was a very sad moment for me since other children were receiving toys for the first time, a 13year old girl was so excited to have her own toiletries; I overheard her saying “since I was born I never had my own toiletry bag and toiletries and I’m not going to let my sister try to take it”.

I wish to thank our National Director and Project Manager for ensuring that these events are a success by providing us with funds and facilitating the possibility of getting these presents to our members; keep up the good job you are doing. God Bless you!

World Down Syndrome Day The 21 March 2014 was the day which everybody was waiting for, this event was held and celebrated at Senkgwe Primary School. Amongst the invitees were representatives from the Department of Social Development, South African Police Services, Department of Education, SASSA, Ride with Mafikeng Motor Bikes and the Office of The Status of People with Disabilities. The event was successful; children enjoyed themselves by dancing and singing; they were also entertained by a group of young ladies and young men

North West through a beauty contest called 'The Face of Mafikeng'. SASSA gave the children school bags, stationery, squeeze bottles and lunch boxes. We wish to thank all the people who participated in the event. We wish to extend our gratitude to DSSA, SASSA and Ride with Mafikeng Motor Bikes who contributed to the success of celebrating the day by providing us with funds to buy food and refreshments for everyone who attended.

Potchefstroom The group activities is an ongoing process. The members have increased their home visits and awareness campaigns.

The monthly meetings are well attended and members are encouraged to make sure that children are enrolled in schools and they attend monthly therapy and medical treatment.

To celebrate the World Down Syndrome Day the members organised a lunch at Elizabeth Vana’s residence. Parents and children were treated to a sumptuous meal and enjoyed themselves. The group wishes to thank DSSA for the support.

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Branch News

DSSA Outreaches T

Tzaneen

he Tzaneen Outreach group members are reaching out to families of people with Down syndrome in other areas of Limpopo Province. They have strengthened their network and visibility by mobilising communities in Giyani, Mokgoloboto village and Dan village in the Mopani District. Many parents in these areas are realising the importance of outreach groups.

National Down Syndrome Day During October 2013 the group celebrated National Down Syndrome Day at N’wamitwa village. This created much needed awareness in the area. Many parents and their children made it to the event and new parents were introduced to the group.

Year-end-function The 2013 year-end-function was held at Tzaneen Country Lodge, children were given presents donated by Operation Shoebox.

Roxy and Gloria from Down Syndrome South Africa were present to hand over the gifts. Lunch and refreshments were served and enjoyed by all our members.

Everyone present enjoyed the music rendered by Michael, an adult with Down syndrome.

The Tzaneen Outreach group is very proud of the role that Down

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Syndrome South Africa play in the lives of people with Down syndrome and their families.

Limpopo

They wish to thank Roxy and Gloria who made a great effort in bringing the presents to Tzaneen. A great thank you also goes to Adri Kruger and the staff of the Tzaneen Country Lodge for hosting the year end event.

was elected to be the new chairperson and Mr Khobo as the new deputy chairperson. The secretary and treasurer could not be replaced as the new committee wanted Ms Mathosa and Ms Masipa to hand over resignation letters before they could be replaced on the committee. Difference Motseo was seconded by DSSA to assist in co-ordinating the group activities, the members welcomed him. It was suggested that for future meetings the group will rotate the venues so that parents in other areas can also access the meetings.

The Polokwane outreach group could not organize World Down Syndrome Day events but they will start with group activities and campaigns. All the members who were not present will be invited to the next meeting on 30th May 2014.

Polokwane

I

n the last quarter of 2013 the outreach group faced challenges of parents not attending meetings. The group could not properly function due to the ill health of Grace Sekhu and some members left the group.

Zaza Mogale and Nellie Marokane made an effort to bring back the members.

On the 14 March 2014 the parents held a meeting to revive the group. Grace Sekhu requested that she step down as chairperson. The parents decided to elect a new committee; Mr Makwea

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Branch News

DSSA Outreaches

Mpumalanga - Witbank

N

ational Down Syndrome Awareness Day which was supposed to be celebrated on the 20 October 2013, by the Witbank outreach group was postponed.

Year-end-function On the 05 December 2013 the children accompanied by their parents travelled to Gold Reef City in Johannesburg for their year-end function. Mr Simon Jiyane from Ogies sponsored the bus which was used for the transport by the group. We thank him for this very generous sponsorship. Our children and young adults were given presents donated by Operation Shoebox. It was a successful outing as everyone present enjoyed themselves.

Group Outing On the 5 January 2014 the group had a picnic braai at Klipfontein

Lake. All the children and parents had a great day; they enjoyed the food and the music which was sponsored by the venue, they really loved the dancing the most.

NPO Status In February 2014 the members made a decision to register the Witbank Down Syndrome Outreach group as an NPO, they invited officials from the Department of Social Development to guide them about NPO registration. The relevant documents for NPO registration were completed and submitted to the Department of Social Development. The application is being processed and the response is likely to be positive.

World Down Syndrome Day On the 13 March 2014 Lerato Mokoena and Pastor Mabhena were invited to the Emalahleni

radio station to talk about Down syndrome. Ikwekwezi FM also interviewed Lerato about the Witbank Down Syndrome Outreach Group and Down syndrome in general. Lerato used the opportunity to invite the community to the World Down Syndrome Day event. The World Down Syndrome Day event was held at Schoongezicht soccer field. There were four teams from churches which participated in a tournament and two reached the finals. The Live Life centre were the winners and they received a trophy and medals. Additionally all children were given medals; it was a fun day and well attended. Thanks to Down Syndrome South Africa, NSB Solutions and Chicken Licken for the support and making it possible for the day to be a success.

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Contact Details DSSA OFFICE

National Executive Director Dr Mmuso Barbara Monyemore (dssa@icon.co.za) National Organisational Development Officer Wilna Gates (dssa.odo@icon.co.za) National Project Manager Jabulane Dikgale (dssa.pm@icon.co.za) National Officer Administrator Gloria Monare (dssaoffice@icon.co.za)

DSSA OFFICE BEARERS

Chairperson: Thabang Chiloane Vice Chairperson: Dumisine Khuzwayo Treasurer: Klazina Hattingh Secretary: Sonia Skein Additional Members: Lynne Rutherford and Zimkita Metele

BRANCH CONTACT DETAILS Amathole (East London):

Denise Taylor (dsaael@telkomsa.net) Contact number: 043 722 4918

Gauteng:

Marlene Boucher (marlene.dsag@megaweb.co.za) Contact number: 011 615 4180/011 484 6116 Petra le Roux (petra@dsag.co.za) Contact number: 072 225 5409

Kwa Zulu Natal:

Caroline Willis (downskzn@iafrica.com) Contact number: 031 464 2055

Support Cape (Red Cross Children’s Hospital): Val Hoy (downscape@gmail.com) Contact number: 031 464 2055

Tshwane:

Zelna Barends (zelna@downs.org.za) Contact number: 012 664 8871/8928/8349

Western Cape (Belville):

Tineke Boshoff (info@downwc.co.za) Contact number: 021 919 8533

Nelson Mandela Metrople (Port Elizabeth): Lindy Opperman (info@pedsa.co.za) Contact number: 083 629 9906

Free State:

Dorothy Russel (russeldc@ufs.ac.za) Contact number: 051 405 3292

DSSA OUTREACH GROUP CONTACT DETAILS Limpopo: Tzaneen Difference Motseo Contact number: 078 246 0888

Polokwane

Grace Sekhu Contact number: 083 268 3655

Mpumalanga Witbank

Lerato Mokoena Contact number: 083 732 6189

OR

Nhlanhla Malinga Contact number: 072 586 5261

Northern Cape Kimberley

Ntombi Ndlovu Contact number: 078 567 8142

North West Potchefstroom

Elizabeth Vana Contact number: 083 575 5771

OR

Salome Malebo Contact number: 076 738 8817

Mafikeng

Nontsikelelo Sojane Contact number: 078 594 8763

DSSA SELF ADVOCATES

Chairperson: Thenjiwe Ndebele Contact number: 083 395 3560/073 166 2923 Vice Chairperson: Kagiso Nwandwala Contact number: 084 326 1226