Fragile X Society Newsletter by Fragile X Society UK

Newsletter issue # 82 | November - January

Birmingham Conf erence (Page 12)

Fragil e X Awareness Day (Page 3)

Oral Heal t h Advice (Pages 8-9)

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issue # 82 | November - January

Notes from the Chair extraordinary people. I will name none but you and they know who they are. We all live in a special world and, despite its very obvious challenges, it is a huge privilege. We see and understand things that most don?t. It is indeed # FragileXtraordinary. Society is becoming a crueler place as the disabled pay the price for the failings of government and bankers. Our society has to try and provide a counter balance. Your board is in as good shape and talented as it has ever been. Really exciting things are possible with them and Becky at the helm, but they need and deserve you support. It is my view that family and supporter fundraising now has to become our bedrock. Trusts and grants love to fund ?new? projects, but not day to day services, so it is up to us to make our society sustainable and then look to them for the add ons.

When Becky took over as Chief Executive, just over a year ago, I thought it was time, after many years, for me to stop writing these introductions and allow her to become known to you all by taking over.

I?d like to thank you all for the support and friendship that you have shown me in this role and, again, assure you that I remain dedicated to you, the staff and our cause. Please support Becky, our staff and the board in any way that you feel able to. And have a great holiday season with your family.

As 2015 draws to a close, she has asked me to do one more. The reason being that, after some seven years, I am stepping down as the chair of the board of your trustees. Seven years is a long time and it I believe that it is time for someone else to assume the role for the good of the organisation. I want you to know that I remain fully committed to supporting Becky and my successor, who will be elected at our December board meeting, in the exciting and challenging times ahead. The last seven years have seen sleepless nights, as I have worried about whether we could keep our society going in anything like its current form, and elation as I have seen the support that families have had from our support workers, conferences and newsletter. And relief and admiration, when our wonderful donors and fundraisers have come to the rescue, time after time. There is a well worn phrase about ?standing on the shoulders of giants? and I have felt both that support and that expectation. I have had the privilege of working with

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A not e f rom t he CEO... The Fragile X Society would simply not be what it is today without Steve?s passion and dedication. Steve has lead the charity as chairman through changing times, and helped to drive it forward through thick and thin. On a personal note, it is Steve who encouraged me to join the charity as a Director, for which I will always be grateful, and has provided me (as well as those in my role, before) with unwavering support. On behalf of all of the staff, Directors and members of the charity: thank you, Steve. Elections for our new Chair will take place at our meeting in December and we look forward to introducing you to our new Chair in the next edition of the newsletter!

issue # 82 | November-January

Fragile X Awareness Day

2015 European Fragil e X Awareness Day t akes pl ace on 10t h Oct ober every year, arranged by t he European Fragil e X Net work, who represent over 5000 f amil ies f rom 15 count ries. This year was a huge success in raising awareness, with over 1,000 leaflets about Fragile X distributed, and many members of the public spoken to ? we even had a Fragile X advertisement on a city centre billboard! We were excited to coordinate several Flash Mobs; comprised of 100 professional dancers, disability dance groups, and volunteers. Rubicon Dance, a community dance development organisation, took part in our Cardiff Flash Mob giving a fantastic performance in the Capitol Shopping Centre in central Cardiff. In Aberdeen, the Flash Mob took place in the Bon Accord Centre, with an impressive turn out from dance groups: KaSt Dance Company, Fusion Youth Dance Company and Flux Dance Festival. At Farringdon station in London, our Fragile X flash mob entertained commuters. A huge t hank you goes out t o al l t hose who part icipat ed, and hel ped raise awareness about Fragil e X!

Here we have Josh?s story, submitted by his Mum: "This is my son Josh, 20, wit h his l it t l e sist er and nephew at Wembl ey St adium f or t he Engl and rugby game l ast night . This is such a huge st ep t hat Josh made over t he years, as crowds of peopl e he f ound very dif f icul t t o deal wit h. He real l y is very special , and al ways f inds a pl ace in peopl e's heart s t hat he meet s. I'm so proud of him" We love to read your stories, so please keep them coming in, and remember to tag # f ragil eXt raordinary! Other activities included an educational lunch and learn session led by Sandra, our support and development worker, for 62 health professionals from Cornerstone ? a social care organisation based in Scotland.

Lunch and l earn in Scot l and On the day, we were overwhelmed by the response and support through social media, with over 700 photos and stories shared, tagged with our # Fragil eXt raordinary campaign! Through Facebook, we learnt that several of you were lucky enough to pay a trip into London to watch the Rugby World Cup.

Across the rest of Europe, Fragile X supporters held some wonderful events. In France, there was a premiere of a play telling stories of parents and families coping with Fragile X. A large conference was held in Spain, educating visitors about the syndrome.

A big t hank you t o al l who part icipat ed, donat ing your t ime, and sharing your st ories, hel ping t o raise awareness about Fragil e X.

www.fragilex.org.uk

issue # 82 | November-January

Opportunities to participate in research November 2015

St udy of Mal e Fragil e X Premut at ion Carriers Researchers : Dr Andrew St anf iel d, Consul t ant Psychiat rist and St ephanie Brown of t he Pat rick Wil d Cent re, Edinburgh Universit y This study aims to examine the characteristics of men who carry the fragile X premutation and is being run at the Patrick Wild Centre in Edinburgh by Dr Andrew Stanfield and Stephanie Brown, a PhD student. The researchers are looking for male premutation carriers, without a diagnosis of FXTAS, to take part in this important study. Taking part in the study would involve travelling to Edinburgh for a brain scan, a blood test, and also completing some additional tests and questionnaires. All expenses incurred will be refunded. Families in the northern half of the UK will have already had a mailing about this study, those in the south will receive one shortly. If you are interested in finding out more or being a part of the study then please get in touch with: Stephanie Brown: 0131 537 6687 or s0935170@sms.ed.ac.uk or Dr Andrew Stanfield: 0131 537 6265 or andrew.stanfield@ed.ac.uk

Ident if ying Barriers t o Research Part icipat ion wit h f amil ies af f ect ed by f ragil e X Researchers: Dr Andrew St anf iel d, Consul t ant Psychiat rist and Sarah Wright , research nurse, of t he Pat rick Wil d Cent re, Edinburgh Universit y. Experience conducting research studies in fragile X syndrome has suggested that some families are reluctant

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to take part in clinical trials of new medications. All families on the Society research database will have received a short survey, the aim of which is to learn why some families are reluctant to take part in clinical trials for new medications. Thank you to those who have completed and returned their survey. If anyone did not receive a survey and would like one please contact Andrew Stanfield on 0131 537 6265 or andrew.stanfield@ed.ac.uk

Sl eep in Inf ant s and Toddl ers wit h Fragil e X Dean D'Souza and col l eagues at Universit y of London The aim of this study is to discover how variable sleep patterns are in infants and young children with fragile X and whether they are linked to how well they understand and/ or say words. Taking part will involve completing a sleep and nap diary for your child or children for 10 days in a row and answering some questions about your child?s general sleeping habits and development. Families of fragile X children between 6 months and 4 years who have indicated that they would like to be informed of research projects should have received a sleep diary by now. If you have not received one and would like to, or if you have any questions about the study please contact Dean at dean.dsouza@ymail.com or on 07800 882191.

Fragil e X Imaging St udy Researcher: Andrew McKechanie of t he Pat rick Wil d Cent re, Edinburgh Universit y This study aims to study the structure and functioning of the brain in Fragile X individuals of both sexes between the ages of 16 and 70.

issue # 82 | November-January

Research Update November 2015

The study involves having a brain scan (MRI). There would be chances to practice in a mock scanner first. This is an important study, the results of which, will increase the knowledge of the structure and functioning of the brain in Fragile X individuals. The scans take place in Edinburgh, travel costs will be reimbursed. Families on the research database in northern UK will have had a mailing about this study. If anyone who has not had a mailing would like to find out more please contact Dr Andrew McKechanie on 0131 5376685 or at Andrew.mckechanie@ed.ac.uk

Arousal and Escape Behaviour Chief Invest igat or: Becky Hardiman, PhD St udent , Universit y of Kent Researchers at the Tizard Centre, University of Kent, are looking for families to take part in a study investigating hyperarousal and behaviour. Becky and team want to look at whether the body's stress response is altered in fragile X and whether thismay be associated with an increased motivation to escape from day-to-day situations. Specifically, the study will involve investigating behaviour and levels of arousal during the presentation of classroom work tasks. The tasks will be presented with high and low levels of eye contact and attention, to see whether changing the way that work is given, changes the way that the children respond to the tasks. Some families will have already received a mailing about this study, thank you to those who have responded already. The study will involve telephone interview and a single school visit, where Becky will measure behaviour during the presentation of structured work tasks. In order to measure levels of arousal response to being asked to do work, participants will be asked to do spit samples before and after the work. The researchers are looking for boys with Fragile X Syndrome between ages of 5-15 years old to take part. For full information contact Becky Hardiman: rh432@kent.ac.uk or 07756547751.

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Decreasing t he Incidence of Temper Out burst s t riggered by change in boys and girl s aged 7 t o 16 Researchers: Dr Kat e Woodcock, Lect urer in At ypical Devel opment at t he School of Psychol ogy, Queens Universit y Bel f ast and a member of her research t eam, Cl are McGeady. The aim of this research is to evaluate web-based training Dr Woodcock has developed to see how effective they are at helping parents to implement strategies in their own homes which lead to their children having fewer temper outbursts following changes to their routines. The researchers are looking for boys and girls aged 7-16 years, who have temper outbursts to take part. The study involves keeping a simple diary of their child?s outbursts over 6 ? 12 months, it does not involve any travel for the families. The results of this exciting study could be very useful in helping parents deal with temper outbursts. The researchers know that everyone has different ways of thinking about and describing behaviours. The training being evaluated in this research is aiming to help with difficult behaviours that follow changes. If the child you care for finds changes difficult and shows behaviours that can be problematic following changes, then it may be appropriate for you to take part in the study. If you would be interested in taking part but are unsure about whether the child you care for fits in with the requirements for the study, please do get in touch with the research team, and they will discuss this with you. Those families on the 'research ticked' database will have received a mailing with details of this study. If there are any other families who who would like more information about this study please contact: Clare McGeady on: 028 9097 4623 or email: c.mcgeady@qub.ac.uk or Kate Woodcock on 028 9097 4886 or at k.woodcock@qub.ac.uk

issue # 82 | November-January

Research Update November 2015

Social Cognit ion in Fragil e X Syndrome Researcher Prof . Chris Ol iver and Dr. Jo Moss at t he Cerebra Cent re f or Neurodevel opment al Disorders, Universit y of Birmingham. The project s wil l be run by Kat El l is (PhD st udent ) The goal of this research project is to better understand how children and adults with Fragile X Syndrome understand the social world and how this affects their social interactions and relationships. Particularly, to find out how people with Fragile X Syndrome perceive social situations. The researchers are looking for adults and children of all ages to complete one or more of the assessments, described:

Art Ability One of our members, Kunal, has been working with Art Ability to create this beautiful tapestry, named 'Arabilility Team Leaving'. Here are a few words from Kunal himself:

"Iam marke Picuter Arabilility evryond pelople Tina caorl Deanne Deanlle caire Diane Jill Lzzy Sammy Charlotte S Charlotte H chalsea Vikcy Anne Aalx Kaye Gemme Lainda Janice Kunal Maira Lyn" Thank you for sharing this with us - we love it!

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* Assessments of language and speech development, and social and communication skills. * Tasks and fun activities that demonstrate a person's social skills and abilities in different social situations. The assessments will take place at the School of Psychology of the University of Birmingham or at your home. If you decide to take part and travel to the University, travel expenses will be covered and lunch will be provided. Scheduling of participation is flexible and can include weekdays or weekends, as you prefer. Following your participation in the study, the researchers will also provide you with feedback reports on cognitive assessments and assessments of social and communication development. If you are interested in learning more about this study, or signing up for participation, please contact Kat at 0121 414 2855 or at KRE061@bham.ac.uk

issue # 82 | November - January

Chloe's Covers A Business Venture! You may remember Chloe?s story featured in our newsletter at the beginning of last year. This was in the form of an interview with myself, and took place when she was in her transition year at school. A lot has happened for Chloe in the past year, and I thought it was time for a follow up story on our 25th Anniversary year. Chloe is in the process, with the help of her mum Pauline, of setting up her own business. This has not been an easy journey for the family and did not come without a lot of hard work, determination and negotiation. However, it was important that Chloe was leaving school to do something, not only that allowed her to continue to learn and develop, but something that was meaningful and enjoyable. Chloe?s Covers came about as a result of her grandfather being diagnosed with dementia, Chloe?s mum, Pauline, then started looking at the sensory issues associated with dementia. This was something that Pauline could connect to having raised two children with Fragile X Syndrome and Autism. An idea developed and they looked at sourcing a sensory blanket. They then looked at the idea of a sensory blanket for her dad. It was at this point Chloe said ?I could do that? and the idea developed into a business venture. Pauline pitched the idea to Social Work and after putting forward a very valid case some funding was received from the local coordination team and a room was rented as a base to work from within Thornliebank Resource Centre. Pauline also managed to find a seamstress to be Chloe?s support worker.

Chl oe wit h one of her sensory bl anket s...

However, as most families know each experience brings its own learning curve and they soon realised that one day a week within a room didn?t really lend to Chloe?s ADHD side. She was restless and they had to look at adapting to suit her style. Pauline looked at funding from Scottish Government to build a website, Chloe is very good on computers, so playing to her strengths it was agreed that her skills and strengths would be best used organising orders, answering emails etc with support. The making of the sensory blankets would then be sourced out to seamstress for a wage and Chloe would be supported to do orders, etc from her rented room at the centre. Chloe has learned new skills and is very happy being actively involved in her own business. Chloe adds her own thoughts :

?I think that it is wonderful that I have my own business ? I am a real business woman? It is worth noting that Chloe has Fragile X, autism and a significant learning disability. She faces significant challenges, I think mum really wanted to highlight this, as well as the fact it has not held her back from following her dreams. By Sandra Thoms.

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issue # 82 | November - January

Oral Health Care in Fragile X Syndrome By Dr. Stacey Clough: Specialist Registrar in Special Care Dentistry, Barts Health

Peopl e wit h Fragil e X Syndrome have t he same oral probl ems as t he rest of t he popul at ion but f or many reasons, access t o dent al services and t he dent al t reat ment it sel f can be more dif f icul t , so t he prevent ion of oral probl ems f or peopl e wit h Fragil e X Syndrome is very import ant .

What probl ems occur in t he mout h?

How can we prevent probl ems?

Tooth decay and gum disease are common.

Oral sensory issues can make tooth brushing and diet control difficult, but here are some top tips:

Plaque exists in everyone?s mouth. It contains bacteria and if it is not brushed away, it looks like a thick yellow furry coating on the teeth and can cause bad breath. Tooth decay occurs when teeth covered in plaque are exposed to high sugar foods and drinks. This can cause holes in the teeth, leading to pain and infection. When plaque is not cleaned from the gum line, the gums to become red and sometimes bleed when brushed. This is called ?gingivitis?and will usually settle within 2 weeks by improved brushing. Otherwise with time this can lead to more significant gum disease called ?periodontitis?, where the teeth become loose and can fall out.

1. 2.

How do I know if t here is a probl em? You may notice signs such as: -

Change in behaviour or sleeping pattern Drooling Placing fingers in mouth, hand on side of face or ears Redness and swelling in face Refusal to eat or drink

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5. 6.

Brush the teeth for 2 minutes twice per day with a fluoride toothpaste. The frequency of sugary foods and drinks is more important than the amount of sugar, so having them with a meal rather than snacking throughout the day will reduce the risk of damage to the teeth. ?Sugar Free?items are safe for teeth whereas ?No Added Sugar?items such as squash contain large amounts of natural sugars and are not considered safe between meals. Saliva is natural protection for the teeth and reduces during sleep. Night time brushing is most important because this is when the teeth are most at risk of decay. Milk, which is usually considered a safe drink, contains enough natural sugar to cause severe tooth decay if given at night time. This is common among children that have cow/ breast milk in during the night. Ensure medication ?syrups?are ?Sugar Free?. Visit the dentist regularly so problems can be detected early and to allow familiarity with the dental environment.

issue # 82 | November - January

Oral Health Care in Fragile X Syndrome Access t o t he t eet h can be probl emat ic. It may be easier to brush the teeth from behind while the individual is sitting or lying down. A manual tooth brush may be better tolerated than an electric tooth brush as it does not vibrate. The following techniques help to keep the mouth open on one side, so that we can clean the teeth on the other side:

Toot hbrush handl e Toot hbrush

2 t oot hbrushes: when t he individual bit es on t he t oot hbrush handl e, t his al l ows good access wit h a t oot hbrush on t he opposit e side. Then swap over.

Finger guard Toot hbrush

Finger guard: when t he individual bit es on t he guard, t his al l ows good access wit h a t oot hbrush on t he opposit e side. Then swaps over. The f inger guard shoul d be sol id, not sof t , t o minimise risk of injury t o carers.

How do I f ind a dent ist ? People with Fragile X Syndrome may struggle to cope with routine check-ups and dental treatment. The high street dentist may feel that they do not have the experience to provide comprehensive care. The Community Dental Services are run by dentists who have additional skills in treating children and adults with complex medical and behavioural needs. Where further specialist treatment is needed, a local Dental Hospital (Paediatric or Special Care Dentistry Department), may be able to offer additional options such as treatment under sedation or general anaesthesia to make the dental experience more comfortable and safe. A referral is required from a high street dentist or family doctor to access Community or Hospital Dental Services. To find local dental services, visit: ht t p:/ / www.nhs.uk/ service-search For an Advice Sheet on Oral Health Care in Fragile X syndrome, visit: www.f ragil ex.org.uk/ oral heal t h

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issue # 82 | November - January

Support Worker Updates By Wendy Bowl er Wel l , I guess I had bet t er st art by wishing you al l a Merry Christ mas and al l t he very best f or 2016! I just wanted to give a brief over-view of some new information that we have. Please do call me on 01371 875100 or email wendy@f ragil ex.org.uk if you would like the full version of these papers.

A Hol ist ic Approach t o Behaviour Management Geoff Evans spoke at the Birmingham Conference in 2014 and in Stirling this year. To watch the talk online, please visit the Fragile X UK Youtube channel.

Sl eep Last year Jane and I went to the Kidz South Disability Exhibition, where I heard a good talk from a sleep practitioner from Cerebra. Some of the key points included: -

The main thrust of the talk was to look at behaviour as a whole. Key points included: -

Parents being positive about their ability to manage a challenging behaviour. We all get it wrong sometimes, but there are also lots of times when we get it right. Remembering that in fragile X, there can often be lots of triggers to behaviour, each one raising anxiety levels slightly more, until the individual can manage no longer. Using visual supports such as social stories that talk a person through how to manage a situation - for example a super hero or character they like e.g. "Dr Who thinks I need a break in my bedroom when I get home". Having a safe place for an individual to go to calm down and regroup. Building up the ability to manage known difficult situations e.g. going to a supermarket at a quiet time to buy one thing. Having good established routines at home. Having a distraction at hand in known difficult situations. Sometimes doing whatever is necessary to bring a child back down if that avoids a meltdown ? don?t think about that in terms of giving in.

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The importance of a good and consistent getting up and going to bed routine including, as far as possible, consistent times. It is easier to control when a child wakes and sometimes it can help to anchor the wake up time as the first step. The going to bed routine should aim to be calm. It could include a warm bath if your child finds this calming. Quiet music may be relaxing if your child can not manage a completely quiet bedroom. The light emitted by TVs, computers, iPads etc is not conducive to sleep and so it can help if your child does not watch any of these a little while before bed. Darkness encourages the production of melatonin, which encourages sleep. If your child cannot settle in the dark, it may help to have a dim light and gradually reduce the brightness. Having a calm bedroom with calm decor, duvet covers etc Encouraging your child?s ability to go to sleep alone. If they cannot manage this it is best to reduce your presence in stages. Possibly tucking your child in with a sheet and blankets/ sheet over a duvet.

issue # 82 | November - January

Support Worker Updates Educat ion, Heal t h, and Care Pl ans There have al so been several changes t o Educat ion, Heal t h, and Care Pl ans. Key point s incl ude: -

School/ Early Years Action and Action Plus (the stages of extra support before the old Statements) have been repl aced by SEN support . This involves assessing a child?s needs, putting in provision to meet those needs and then assessing again to see how things have gone.

The l ocal aut horit y (LA) has a duty to carry out a f ul l assessment for an EHCP if your child has or is likely to have special educational needs (SEN). A lot of evidence does not have to be gathered to warrant an assessment. Make sure that any reports that are part of this assessment are current ? as a rule of thumb no more t han a year ol d. Some LAs are putting together plans that look like an EHCPs but are not. Only an EHCP will have the backing of t he l aw.

Only educat ional sect ions of an EHCP have t he backing of t he l aw. Section B is educational need and section F is educational provision. If therapies like speech and language therapy (SLT) or occupational therapy (OT) are part of your child?s educational need, make sure they go in B as provision in F will only be put in to meet needs listed in B. SLT and OT are f unded by heal t h aut horit ies but they can still be listed in sections B and F. Anything that involves t raining or gives your child bet t er access t o educat ion can const it ut e an educat ional need.

The Chil dren and Famil ies Act st at es in sect ion 19 that the LA must have regard to support the child or young person to achieve the best possible outcomes.

Make sure all sections cont ain as much det ail as possibl e e.g. how much SLT your child will have, who will deliver it, how often etc. Also the EHCP should be the final document and should not refer to assessments still to be carried out.

Once started the deadline for transfer from Statement to EHCP is now 18 weeks.

Learning Dif f icul t Assessment s (LDAs) were used when young people did not have a Statement, but were likely to have SEN into further education. These are now being phased out and repl aced by EHCPs. However, this is not an aut omat ic process and you will need to ask f or an EHCP.

There have been some probl ems nationally with input f rom heal t h and social care into EHCPs.

Families can opt to have a personal budget (PB) rather than have the LA provide what is set out in the EHCP. A PB essentially allocates the amount of money it would cost the LA to provide what is set out in the EHCP. You can opt t o have al l t he money and sort out al l of t he services or just have part of t he budget . You can opt t o manage a PB by yoursel f , or have someone el se, or anot her organisat ion manage it . In terms of educat ion, the PB covers t he more special ist input t hat a school / col l ege has t o provide. The LA can refuse a PB for education if it would be an inefficient use of its resources, and a school can refuse a PB for any service on its premises e.g. if you want to appoint your own teaching assistant (TA).

Social Service Input -

Once a child reaches 16 the EHCP refers to them as a young person (YP). Subject to them having capacity (and the default position is that they do) they can have cont rol over t heir own educat ion.

We also have some new information on the process of accessing support from social services for children. Please contact us to find out more.

Well that?s it from me this time! We have some resources available to help prepare children for Christmas. Please do call if we can be of any assistance. I hope you all have a great time.

www.fragilex.org.uk

issue # 82 | November - January

Charity Updates Genet ic Al l iance Tal k Our CEO, Becky, spoke at Genetic Alliance?s Welsh Rare Disease Network launch, at the beginning of the month. The network is a new initiative for individuals with rare, genetic or undiagnosed conditions, and the organisations who support them, in Wales. The aim is to input on research into and supports for rare conditions in Wales. Becky spoke about Fragile X and about why support organisations for specific organisations, such as the Fragile X Society, are so important. It was a great opportunity to raise awareness of Fragile X and we look forward to being involved as the network grows!

Birmingham Conf erence This year?s conference was our biggest ever! Thank you to all those who came to join us to hear from some of the world-leaders in Fragile X research. We have recorded the talks and are working with the speakers to produce some resources from the day, including the practical, take-home points. We will put these up on our website when they are ready! Thank you also for your feedback from the day, it was great to hear that so many of you enjoyed it. We are also really grateful for the feedback that you would like to focus on more practical issues in future conferences and will take that on board!

Inf ormat ion and Communicat ions Of f icer In October, we welcomed Sophie Kashi as the newest member of staff to the Fragile X Society team. Sophie has previously worked for charitable organisations in Cambodia, London, and Nottingham, where her passion for communications and outreach grew. Her position will be focused on helping us to develop and improve our communications efforts. With an arts based background, Sophie will also be assisting us in developing our marketing materials and web-content. In her spare time, she enjoys taking pictures, keeping fit, and cooking. Contact: sophie@fragilex.org.uk

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From l ef t t o right : Becky, Wendy, Sophie, and Jane

issue # 82 | November - January

Fundraising 100+ Cl ub The 100+ club is a fundraising scheme with monthly cash prizes. The annual subscript ion of £20 brings valuable support to the work of the Society and gives you a chance to win one of the following cash prizes in the monthly draw: -

11 mont hl y prizes of : 4 December prizes of : 1

I start making cakes weeks before the date and freeze them, so it is only sandwiches made at the last minute. On the day, we put up a donation box in a prominent position with some leaflets, but then it is a social occasion without raffles or tombola. We find people are very generous and the amount they donate is always far more than we would have possibly charged if we were selling the tea and cakes.

x £20 x £100, 2 x £50

Congratulations to the following winners: September No. 174 Barbara Higginbotham No. 20 Sandy Stratta No. 161 Mr and Mrs Jones No. 51 Lady Elizabeth Edward October No 241 Teresa Pilkington No 165 Lyn Morgan No 152 Mr and Mrs Bunton No 160 Mr M and Mrs B Jones

Sal l y Hicks: Tea Part y! Not being ones for energetic feats like marathon running, cycling, or scaling mountains, our fundraising efforts for the Society have centred on the annual tea party. Each year since the Society first came up with the idea in 2004, we have hosted a tea party in our garden in May. The numbers coming have gradually increased; this year we had 70 people, and for the first time had to decamp indoors because of rain, which was a bit of a squash!

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When we started we tried putting notices up at work inviting people, but found that to not really work ? the people who came were those we gave invitations to. We do find delivering named invitations with a request for RSPV works best. Many of those who cannot come generously send a donation anyway. Thank you t o al l who came. The t ea part y is def init el y a f ixt ure on t he Hicks cal endar now!

In memoriam donat ions We are touched and grateful for the donations which we have received in memory of loved ones who have passed away: -

Mr James William Cattermole Mr Fred Halliwell Mr Peter Cooke April Holly Reeves

If you're thinking about fundraising, and would like to discuss your ideas, please contact Susan: susan@f ragil ex.org.uk

issue # 82 | November - January

In other news... We want t o know what you t hink! It is really important to us that we provide the best support possible to you. In order to do that, we want your feedback as to what has helped, and whether there is anything we could develop or do differently in the future. This information is also really important for helping to show funders that what we are doing is needed, that it helps to make a difference, and whether there are any areas that we can develop with new projects.

Member Cont act Inf ormat ion Updat es We are in the process of updating the societies database, and would like to confirm the e-mail addresses of each of our members. Please e-mail susan@f ragil ex.org.uk either from, or with, your current address.

Compet it ion: Hel p t o decorat e t he Fragil e X Of f ice! We need you! As winter draws in, we are hoping to bring some colour and character onto our office walls. Using paint, crayons, or felt tips, we ask you to create and send in your artistic masterpiece!

We have developed surveys to get feedback from you; one for families and individuals, and the other for professionals. They will take about 10-20 minutes to complete- so, grab yourself a cup of tea and help make a real difference today by giving us your thoughts!

The t heme f or ent ries is 'happiness' - show us what makes you smile, and keep our team smiling all day long!

Pl ease visit www.f ragil ex.org.uk/ survey to complete the form. We would appreciate receiving a response as soon as possible. Many thanks in advance!

Send your entries by post or e-mail - details can be found on the back page of this newsletter.

'Tis the Season to be Jolly! Christmas is just around the corner, and what better way to send season?s greetings to your loved ones than with one of our Fragile X Christmas cards. Our two new designs this year are pop-up Santa and ?Rustic Christmas?, as well as ?Christmas Post?and ?Christmas Wish?. Please visit our website at www.f ragil ex.org.uk/ christ mascards to place your order; cards will be sold in packs of 10 at ÂŁ4 each + ÂŁ3 f or post age. We also accept a post al order f orm (see below) with a cheque made payabl e t o The Fragil e X Societ y.

Name:

.........................................................

Address: .......................................................... .......................................................... .......................................................... ..........................................................

www.fragilex.org.uk

Quant it y: Pop Up Santa

Rustic Christmas

Drawn Angel

Drawn Christmas Cards

issue # 82 | November - January

Directors & Specialists Fragil e X Societ y Direct ors The Fragile X Society?s Directors lead the charity by advising on financial, strategic and governance issues. If you are interested in becoming a director, please contact Becky Hardiman.

Chair: Steve Harris Vice-Chair; Fundraising Sub-Commit t ee Lead: Craig McDonald Treasurer: Isabel Stirling Secret ary: Nerina Dewar CEO; Conf erence & Event s Sub-Commit t ee Lead: Becky Hardiman Research Sub-Commit t ee Lead: Sally Hicks Market ing & Comminicat ions Sub-Commit t ee Lead: Alison Evans Ot her Direct ors: Dorcas Slaney; Reem Waines; Nerina Dewar; Alison Evans; Gaia Scerif; Lucia Elghali; Kathryn Silk

All directors can be contacted at info@fragilex.org.uk

Special ist Advisors The following experts volunteer their time to support the Fragile X Society: Dr Angel a Barnicoat , MD, FRCP Consultant Clinical Geneticist, Great Ormond Street Hospital NHS Trust

www.fragilex.org.uk

Prof Kay E Davies, CBE, F Med Sci, FRS Department of Human Anatomy & Genetics, University of Oxford Dr Denise Dew-Hughes, Ed.D Teacher, researcher and author in special education Charl es Gibb MA, MSc, Dip Ed, AFBPS Principal Educational Psychologist, The Educational Psychology Practice Dr Mark C Hirst , BSc (Hons), PhD Head of Cell and Molecular Biology, Faculty of Science, The Open University Dr SĂŠbast ien Jacquemont , MD Department of Medical Genetics, University of Lausanne Prof Chris Ol iver BSc MPhil PhD CPsychol AFBPsS Professor of Neurodevelopmental Disorders, Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham Prof Gaia Scerif , BSc, PhD Associate Professor and Tutorial Fellow, Department of Experimental Psychology, University of Oxford and St. Catherine's College Dr Andrew St anf iel d MB ChB MRCPsych Senior Clinical Research Fellow, University of Edinburgh Prof Jeremy Turk, MD, BSc(Hons), FRCPsych, FRCPCH, DCH Consultant Child & Adolescent Psychiatrist, Southwark Child & Adolescent Mental Health Neurodevelopmental Service

We are here to support you, please get in touch We hel p anyone who is af f ect ed by Fragil e X; t heir f amil ies and f riends; prof essional s working wit h peopl e wit h Fragil e X; or anyone who want s t o know more. - Our Helpline is open 9am ? 5pm Monday to Friday providing understanding, information and support - Up-to-date resources, literature and publications about Fragile X - Peer to peer support online and via events - Conferences, training and events - Support for and opportunities to take part in research into Fragile X Syndrome and Fragile X Carrier effects.

Fragil e X Societ y St af f Becky Hardiman, CEO becky@f ragil ex.org.uk Contact Becky for enquiries relating to the development or management of the Fragile X Society.

Wendy Bowl er, Support Worker wendy@f ragil ex.org.uk Contact Wendy for enquiries about children and adolescents with Fragile X Syndrome; support groups; enquiries about carriers. Jane Ol iver, Support Worker jane@f ragil ex.org.uk Contact Jane for enquiries about adults with Fragile X Syndrome and enquiries about carriers.

Sandra Thoms, Support and Devel opment Worker f or Scot l and sandra@f ragil ex.org.uk Contact Sandra for all enquiries about individuals and training in Scotland

Susan Layt on, Cl erical Assist ant susan@f ragil ex.org.uk Contact Susan for membership queries, fundraising support, event booking and purchase enquiries.

Tim Pot t er, Bookkeeper t im@f ragil ex.org.uk Contact Tim with invoicing or day-to-day financial enquiries.

Sophie Kashi, Communicat ions Of f icer sophie@f ragil ex.org.uk Contact Sophie for enquiries about our newsletter, publications, website, and social media platforms.

Tel ephone: 01371875100 Address: Fragile X Society, Rood End House, 6 Stortford Road, Great Dunmow, Essex, CM6 1DA Email : info@fragilex.org.uk

/ thefragilexsociety or / fragilexukgroup

@fragilexuk

Fragile X UK

fragilexuk

Charit y Regist rat ion Number: 1127861

www.fragilex.org.uk

Company Regist rat ion Number: 6724061