Newsletter issue # 88 | May - July
Famil y St ory: Jul ie & Tom (Pages 3-4)
Top 10 Tips f or Teachers (Pages 11-12)
Famil y St ories (Page 5)
Famil y Conf erence (Pages 7-8)
www.fragilex.org.uk
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issue # 88 | May- July
Wel come t o our summer edit ion of t he newsl et t er! We hope you enjoy t his issue and al l t he updat es f rom us at t he charit y. There are a coupl e of t hings t hat I want t o specif ical l y highl ight f rom wit hin t his issue:
Our brand new event ! Make sure you read about our new family weekend coming up in September! We have listened to the feedback that people have given from the conferences and hope that lots of you will be able to join us for this exciting event at the Thomley Centre! Our aim has been to create an all inclusive event. The Thomley Centre is a wonderful setting. Recently refurbished the centre has a new pavilion where we will be holding our main talks. Closed to the public over the weekend we have the whole centre to ourselves. Thomley staff will be there on the day to make sure children are entertained. Read the full article on page 7. Books your accommodation early to avoid disappointment. We have a fabulous rates for family rooms.
A goodbye in t he t eam Sophie, our Fundraising and Communications Manager has now moved onto a new role at the National Autistic Societyshe will be much missed but we wish her all the best with her new job! We are so grateful for all the support she has given to the charity in the time that she has been with us. We are looking forward to introducing you all to our new Fundraising Manager very soon!
Direct ors Our charity is led by a fantastic group of volunteers. We are looking for people interested in joining our Board of Directors, especially those with legal expertise. Please check out the enclosed insert for more information and you can chat to me (becky@fragilex.org.uk) or Craig (Chair: c_mcdonald3@icloud.com) for an informal chat about the role. Finally, we would like to say a huge thank you to Tally, who has volunteered to put together this newsletter and to Steve who is currently volunteering to run our Social Media. We are so grateful!
CEO, The Fragile X Society
www.fragilex.org.uk
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Family Stories When our boy Tom was four he was diagnosed with autism. When he was five, just in case that wasn?t enough, he was diagnosed with Fragile X Syndrome and we began processing the bald fact that I, his mother, had given it to him.
We spent years finding out stuff, getting referrals, appealing for schools and transport to schools; trying to see specialists and therapists and advisers; experimenting with this diet then that diet; navigating the choppy waters of the Fragile X Society Conference. We wondered about the ghost child - the one we thought we?d get when we got this one instead and in all our efforts to understand the Thing and to get the Stuff we lost sight of the Boy - the most important thing of all. It?s easy to do. Our struggles to know the science and the medicine and the schools, the health procedures, the Disability Living Allowance and the Carers? Allowance were just brain-occupiers, doing-things,
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distractions from a boy wondering, if he could, when he might get a look in. Tom will be 15 in May. He is willowy with a huge ball of curly hair and is sharp of knee and elbow - ?like a drink of water? his grandpa would say - and he is starting to cultivate the long chin and generous ears of Fragile X Syndrome. Here?s a bit more about him. Tom loves his older sister Hettie, pizza, pasta bake and his grandma?s almond tart. He loves Nintendo?s Mario, Luigi, Peach and their Baby equivalents. He likes to watch Mr Bean but is not so sure about Scooby Doo and The Simpsons. He loves Room on the Broom, Where?s My Teddy?, The Crow Trap episode of Vera and the opening titles of US TV show Monk. He knows Inspector Morse (and young Endeavour), Lieutenant Columbo, Sherlock Holmes (Cumberbatch and Downey Jnr versions) and can never not smile at Gnarls Barkley?s Crazy. He watches You Tube videos of planes, trains and automobiles and can name every British vintage car. He also likes the Peel P50, the Bubble car and the Fiat Cinquecento original version driven by Italians with jumpers tied around their shoulders. He covets the Ford Anglia, the Morris Minor, the Land Rover Series II and the Robin Reliant. He likes to wear his Minions Christmas jumper when it?s Christmas, but mostly when it isn?t.
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Family Stories He doesn?t do phones or Skype or social media. He makes funny faces and strikes odd poses in front of mirrors and any other reflective surface, except for when someone else is in the mirror too, which is when he doesn?t do mirrors. For years he would only talk in whispers and we would ask him to use Big Voice. Now Big Voice never lets up and his whispers perforate eardrums. He says he loves wool string and candle tubes and doesn?t care that no one understands what they are. He?ll watch toy aeroplane crashes until he?s weak with laughing and so much model train and plane footage that Chuffer and Ruby and Fokker (careful) are now part of the family vocabulary. He won?t go to bed in anything but his Spiderman pyjamas - a present from Auntie Tracy - and won?t leave the house without a twiddler and a pot - a tiny bead or ball to roll between a thumb and a forefinger and something to drop it into and shake. He tells school that he spends his weekends walking with grandpa when grandpa lives 200 miles away in Liverpool. Tom can?t pull tongues or spit out toothpaste or alternate feet when he walks down steps and his hatred of brushing his hair is only out-hated by having it cut.
Tom has lots of Worry Words in his anxiety arsenal. Here are a few: Mick Martin, Oh no!, Shaggy and Scooby, O dear!, Freddie, Hurray!, Trampolining Girl, I did it!, Football Man, Yippee!, No Party Food, Pull, Push, Down to the Pool, I Don?t Like Parties, Ping. Tom finds it hard to make friends, have conversations and not be worried. He struggles to express himself and to understand how he feels. He?s not the only one. He is never cruel or malicious, never bullies, never holds a grudge, never gives cheek or says a bad word against anyone. He is never embarrassed by his bumbling parents. It?s ten years since Tom?s diagnosis and, as the did-that-really-happen fog begins to clear, his dad Tony and I are realising that he really is and always has been - a rather splendid chap.
The Fragil e X Societ y woul d l ike t o say a huge t hank you t o Jul ie But t erwort h f or sharing her st ory. www.fragilex.org.uk
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Family Stories Some of you may be members of our popular Fragile X Facebook group. The group is a safe space monitored by our support workers, where families share stories and advice. Here are just a few of our favourite posts from the last few months... ?We went to Portsmouth today and wanted to go up the Spinnaker Tower. We weren't sure how Luke (6) would cope, but we decided to take a gamble and boy are we glad we did. He was amazing! FX 0 - 1 Family Day Out.? Sharon Whit e
?What a capable boy my James is, helping to remove the old path rubble so we can put down some decent cobble. Well done, Muffin Man!? Kat herine DB Wat t s
?So proud of my Percy. He managed a whole theatre trip (he had to leave a few times, but no meltdowns). The funny moments crack me up and keep me going. This is him wearing sunglasses chillin?watching Joseph And The Amazing Technicolor Dreamcoat, which he loves. He had just shouted out in Joe McElderry?s solo... ?I WANT KING BIT?. Come on, the whole theatre was thinking it!! He just shouted it.? Lucy Ainsl ey Cl ough
?I am so proud. My son Taran managed his first haircut in 11 years this weekend. All with the help of his amazing support. Not only was I over the moon, but so was he. I just want to say a huge thank you to Andy the barber who was so patient and so good dealing with Taran's sensory issues - it took 2 hours. It's been a very difficult few months but, with the right support, I think we're getting there. Just such a shame we had to fight so hard to get it.? . Tal l y Not hey
?Joseph started residential college last September and has matured so much. This was taken recently. ?Mum I'll get the washing in for you.?What a helpful young man he is becoming.? Hel en Howel l s
Join our Facebook group by visit ing: www.f acebook.com/ groups/ f ragil exukgroup www.fragilex.org.uk
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Fundraising updates ? by Sarah Beal
Coul d you be a Fragil e X Ambassador? We are looking for Volunteer Ambassadors to join our team! We need people who have experience of Fragile X, and who can be the face of our organisation in their community. Our aim is for a network of volunteers to be based throughout the UK, organising fundraising activities, representing The Fragile X Society, and helping to engage people with the work we do as a charity. Find out more about the role by visiting our website: www.f ragil ex.org.uk/ f ragil e-x-ambassadors Please do get in touch with us on 01371875100 or info@fragilex.org.uk to be sent an application form
Fundraising Updat es... www.f ragil ex.org.uk/ 100-cl ub-f xs t o regist er!
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 : December prizes of :
4 x £20 1 x £100, 2 x £50
Congratulations to the following winners: 100 Club winners for the new subscription year starting May 2017: May 2017: Peter Ainsley, Alan Sharrock, Jean Maiden, Andrew Sutherland June 2017: Ashley Shaw Kate and Kevin Ferguson Lyn Morgan David Cockram If you'd l ike t o join our 100+ cl ub pl ease visit :
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: -
The mother of family member Merryn Bolton The husband of family member Christine Price Catherine Forrestall Timothy Edward Lumisden Strange Michael Frederick Tunnicliffe Stephen Turton
Support us in 2017 An really easy way to give is by making a one-off donation, or signing up to make regular monthly donations. As little as £3 per month could help us pay to send vital information to a newly diagnosed family. Please visit www.f ragil ex.org.uk/ donat e or call us on 01371 875100 to find out more.
Int erest ed in f undraising f or us? Cont act inf o@f ragil ex.org.uk f or your f ree f undraising pack!
www.fragilex.org.uk
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23rd - 24th September 2017
Fr agile X Fam ily Week en d Con f er en ce Thomley, Menmarsh Road, Worminghall, Buckinghamshire HP18 9JZ
We are so happy to announce our 2017 Annual Conference at the Thomley Centre in Worminghall. It?s a very exciting departure from our usual style of conference. Our aim is to provide an all-inclusive family event where along with talks and workshops you will have plenty of time to meet other families and enjoy the facilities. The Thomley Centre is a dedicated place for people of all abilities and disabilities with experienced and nurturing staff. Along with the Thomley Centre, we have arranged fun activities for all ages and abilities including, Lionel the Train, story and song time session, Sports including football, cricket and archery, bubble stations, arts and crafts and face painting. Facilities include free use of bicycles (for all abilities), swings for all levels, including wheelchair users, wooden fort, zip wire, trampoline, newly refurbished sensory room, soft play area, toy room, teenagers room and a gym.
www.fragilex.org.uk
Over the two days, we will have a series of talks (two per day) and workshops that you and your children can attend. Thomley has a very lovely cafe that serves freshly prepared food is on the premises but feel free to bring a picnic, hopefully we'll have great weather! Book early, tickets are available from www.fragilexconference.eventbrite.co.uk on Eventbrite or call the office on 01371875100
?Last year's event was a great success, but plans are underway to make this year's conference even better?
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Tal ks Dr Jane Wait e (Research Fellow and Clinical Psychologist)
Home From Home Care - transitioning into adulthood advice.
Behaviours that challenge
Sensory Bus -What does it feel like to have sensory overload? We are very excited to have the sensory bus on site all weekend. If you would like to experience what our children and adults feel every day, you will have the opportunity to step into their world. It's an eye-opener!
Dr Hayl ey Crawf ord, Research Associate, Centre for Research in Psychology, Behaviour & Achievement - will be covering their recent work on anxiety by giving an overview of their research in this area and also go over some of the strategies listed in the Cerebra Anxiety Guide Sarah Whit e from UCL will be talking about work that she and Jo Moss have conducted on behavioral and emotional traits in mothers/ non-mothers with the premutation. Sissy would like to present results from her recent EEG study Pat rick Wil de Cent re
Ol l ie and His Super Powers - Ollie Coaches supporting families and children. Ollie & His Superpowers is a simplistic but powerful way for us all to understand why we feel what we feel, and that no one can make us think or feel anything we don't allow ourselves to. Sincl airsLaw - Legal advice Cl inic - If you have any legal concerns, or would like to find out if that is the best course of action for your situation, SinclairsLaw will be on hand to help.
Workshops Jennif er Joan St enhouse - Mindfulness for parents. Mindfulness is a simple and effective way to de-stress, relax and improve your ability to deal with life's challenges using techniques you can practice any time, anywhere
Sat urday Evening Barbecue Booking required Join us for an early evening barbecue at the Thomley Centre. Time to unwind, relax and socialise.
www.fragilex.org.uk
Thomley is a place for people of all abilities and disabilities. We bring disabled people, their families, carers and friends together with experienced and nurturing staff that understand their needs. We support people at any stage of their diagnostic journey, whatever their additional needs.
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Research Update One of our charity's aims is to support research into Fragile X, to improve understanding and support for all those living with the various effects of the Fragile X-Associated conditions. Included in this section is details of some ongoing research studies which are seeking participants. All studies have been reviewed and approved by a Specialist Advisor and family members via our Research Committee.
Do you t h in k scr een in g t h e gen er al
incur to attend an interview will be reimbursed.
pu blic f or f r agile X car r ier st at u s bef or e
If you are interested in taking part, please get in contact with the research team (screeningst udy@warwick.ac.uk) or by cal l ing 024 761 51291. We will be happy to answer any of your questions and advise you on how to participate.
pr egn an cy is a good idea? Sh ou ld f am ilies livin g w it h f r agile X h ave a say in w h et h er or n ot t h is is in t r odu ced?
We look forward to hearing from you, Dr Felicity Boardman & Dr Rachel Hale
Now is the time to have your say.
Warwick Medical School
Our names are Felicity Boardman and Rachel Hale. We are both researchers from Warwick Medical School conducting research on the implications of genetic screening programmes.
Cerebra 1000 Famil ies St udy
At present, very little is known about what families living with Fragile X Syndrome/ FXTAS and other genetic conditions think about screening, particularly carrier screening which is carried out before a pregnancy is established (pre-conception genetic screening). We are looking to interview people who have experience of Fragile X Syndrome or FXTAS either because they have it themselves or someone in their family does. The interviews will cover experiences of living with the condition in your family and how you view it. You will also be asked about your attitudes towards the introduction of genetic screening. The (anonymised) results of this study will be submitted to policy advisory groups, such as the National Screening Committee, when they next review their policy recommendations for Fragile X Syndrome screening (expected 2018/ 19). If you?re aged over 18, are not currently pregnant and have Fragile X Syndrome/ FXTAS yourself or someone in your family does, we?d love to hear from you. You don?t need to be an immediate family member of someone with these conditions to take part - extended family members (aunts/ uncles/ cousins etc.) and non-biological relatives (e.g. step-parents) are also welcome to participate. The interviews will last for approximately 60 minutes and will take place either in your locality or by telephone. Any travel costs you
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Mothers, fathers, caregivers of children with Fragile X syndrome and a learning disability (across the range from profound/ severe to mild learning disability), this is your opportunity to inform research and policy for coming decades! The Cerebra Family Research Group at the University of Warwick in collaboration with the research charity Cerebra, wishes to explore the experiences of family members who live with a child with a learning disability, across the full range from mild to severe, aged between 4 years and 15 years and 11 months. We are very keen to survey at least one person in the family (especially, a mother and a father) to explore whether family members have similar or different experiences and capture the experience of the whole family. We want to make this the largest study ever of families of children with learning disability in the UK. The 1,000 families study will further our understanding of what it is like to raise a child with a learning disability and will help shape future information and support for families and children ? so get
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Research Update involved! If you have more than one child with a learning disability, we ask that you complete questions focused on your youngest child who falls within our required age-range (4 years to 15 years and 11 months). If we are able get a good response from families raising children with Fragile X syndrome, we will look at the data separately so that we can let you all know about whether your experiences as families may be similar or different to other families. To find out more about the study and to complete the online survey please visit our website. If you prefer you can request a paper copy of the survey. Information sheets for parents are included in the surveys. However, they are also available on the project website in case you want to read in more detail about the study.
a mailing about this study, those in southern UK will be receiving a mailing very shortly. 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
St udy Aims t o Decrease Temper Out burst s PREDICTORS Study (Parents Resources for Decreasing the Incidences of Change Triggered Temper Outbursts), School of Psychology, Queen?s University Belfast.
Researchers: Dr Kate Woodcock, Lecturer in Atypical Development at the School of Psychology, Queens University Belfast and a member of her research team, Clare McGeady Unexpected changes to routines, plans or expectations can be triggers for temper outbursts or difficult behaviours, for
For enquires pl ease email : f amil yresearch@warwick.ac.uk
people with Fragile X, as well as other developmental conditions. An exciting project taking place at the Queen?s
Fragil e X Imaging St udy
University Belfast aims to equip parents or caregivers with tools to reduce the frequency or severity of these behaviours. The study involves caregivers completing a quick and easy behaviour diary, designed in collaboration with families, about their child?s behaviour, either online or on a smart phone. After this baseline period, parents receive free online training over one month, which includes videos filmed with the help of a child actor. Parents are then able to implement what they have learned and monitor any changes in temper outbursts, using the behaviour diary.
Researcher : Andrew McKechanie of the Patrick Wild
51 families (with families with children with different
Centre, Edinburgh University
diagnoses, such as Fragile X, Prader-Willi Syndrome and
This study aims to study the structure and functioning of the
autism) have taken part in this project so far, to help evaluate
brain in Fragile X individuals of both sexes between the ages
the effectiveness of this training. The study is still looking for
of 12 and 70.
more families to take part so, if your child is age 7-16 years old
The study involves having a brain scan (MRI). There would be
and finds unexpected changes difficult, then you can find out
chances to practice in a mock scanner first.
more by contacting Dr Kat e Woodcock (Tel : 028 9097 4886,
This is an important study, the results of which, will increase the knowledge of the structure and functioning of the brain in
k.woodcock@qub.ac.uk) or Dr Cl are McGeady (Tel : 028 9097 4623, c.mcgeady@qub.ac.uk).
Fragile X individuals.
The results of this study will be published via the Fragile X
The scans take place in Edinburgh, travel costs will be
Society when complete.
reimbursed. Families on the research database in northern UK will have had
www.fragilex.org.uk
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Top 10 Strategies for Teachers The Fragile X Society is delighted to have been able to work with Twinkl, an organisation provide ?Award winning teaching, planning and assessment materials? to the teaching community, to raise awareness of Fragile X. As well as conducting Facebook Live training to a group of Key Stage 1 teachers (with over 39,000 members) we have also written the following blog which has been circulated round their over 2 million members. We are delighted and grateful for this great opportunity to raise awareness. www.t winkl .co.uk For example:
Here are some top tips which may be useful when working with a child with fragile X in school. Each child is unique but these strategies may help to make the best of the strengths and address the challenges that can be associated with the condition
1.
Children are good visual learners so visual input to lessons is important.
2.
Children like to predict what is going to happen and find change and moving on to the next activity difficult. So -
-
3.
4.
Most children have high levels of distractibility and poor concentration. So
-
They may work better in shorter bursts with opportunities to move around in between
-
Use a work station to cut out distractions as long as the child is happy with this. Many do not like to be different. Many are also good mimics so may copy good work role models of other children.
Visual timetables are really important
Prepare them for changes to routine and the end of activities
5 . Simultaneous processing is a strength. So:
Children tend to have short term memory difficulties. They also like to know when something is finished. When they settle to work they need some visual reorientation/ reminder of what they are supposed to do, how long that task is going to last and how they can tell when it is finished. So - Tick lists and schedules can be helpful.
www.fragilex.org.uk
Backward chaining can be helpful -
Learning to read via the whole word approach is typically more effective Backward chaining can be helpful
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Top 10 Strategies for Teachers -
Children tend to learn better when presented with the whole thing e.g. showing what the end product is going to look like. For example:
Make t his
Allow them to use a get out card when they need to leave
-
Having a gradual approach to whole school activities like assemblies
Use
9.
6.
-
Children do have an interest in social experiences, but are anxious in social situations particularly when there are a lot of people around or with less familiar people. They tend not to like being the centre of attention. So
-
An indirect approach is better e.g. asking them to compete sentences rather than answer a direct question
-
Going to the front to get an award in assembly may be difficult
7.
Many children have a very strong dislike of eye contact. So: -
It should never be insisted on
-
Work/ approach them from a side by side position
Fragile X is associated with high levels of anxiety. Any challenging behaviour is usually the child?s communication of that anxiety resulting from something they cannot manage or are finding difficult. Triggers can also build up during the day with the final trigger being something relatively minor. So: -
It helps to keep anxiety levels down by using the strategies already mentioned
-
Distract a child with something they like if you can see anxiety levels starting to rise.
-
Regular access to physical activities can help to keep anxiety levels down
-
Social stories written in the 3rd person can help a child find another way to manage a situation
10 . Girls with fragile X are often but not always less clearly affected than boys. They may have particular problems with social anxiety and in certain subject areas.
8 . Children can have difficulties with sensory processing meaning busier and nosier environments can be challenging. So: -
Have a known quiet place they can retreat to
www.fragilex.org.uk
If you have any questions about anything relating to Fragile X and the classroom, or would like help to create visual schedules or other resources, please contact Wendy: Wendy@fragilex.org.uk 01371875100
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Charity Updates New Project ! Educat e t o Empower: Fragil e X Syndrome resources and t raining The Fragile X Society are very excited to tell you it has received funding from the National Lottery Fund to do a partnership piece of work with the Patrick Wild Centre in Scotland. The project is aimed at raising awareness via production of a new information pack designed for newly diagnosed families. Each pack will include Fragile X information, a DVD ( or link to online DVD), our Scottish Route Map ? designed a written by some of our families, a leaflet on support options and information about the PWC. In order to work closely and effectively with professionals in their local area, we also intend to host five networking events in Aberdeen, Glasgow, Inverness and Edinburgh where the four genetic centres are based, and in the highlands where families are more remote. We hope that the events will provide a platform for professionals to gather in an informal environment to share what is going on in their areas, learn more about the work of The Fragile X Society and The Patrick Wild Centre ? including personal perspectives from family members on their experiences of diagnosis. They will also enable us to officially launch our new packs, sharing them with the most effective services working with families at the point of diagnosis. We would hope them to include representatives from genetic centres, Child Development Teams, CAMHS teams and Adult Learning Disability Teams.
Updat e f rom Sandra in Scot l and
Lunches in Edinburgh Our Edinburgh support is a little less formal with a group of mums meeting up for lunch. chat and support each other. A warm welcome awaits anyone who wishes to join us at either of these groups
Workshops Ayrshire Fragil e X Awareness Dat e ? Thursday 22nd June 2017 Venue ? Meeting Room, Citadel Leisure Centre, Ayr Time ? 1pm -3.30pm To confirm your place, please contact ayrshireoss@nas.org.uk or call 01290 553431 These sessions are open to both families and professionals so if you are interested please book a place, as due to small rooms places are taken up quickly. Getting It Right For Every Child ( GIRFEC) I am hoping to run a GIRFEC workshop in Edinburgh at the end of August. This will be led by Ronnie Hill. Ronnie brings 40 years of experience in children?s services, including social work, education and regulation. A passionate advocate of listening to children, Ronnie firmly believes that GIRFEC holds the promise of helping children, young people and their families have a real say about the nature of the support and services they need. Currently, Ronnie is seconded on a part time basis to the Scottish Government GIRFEC team as their 3rd sector policy implementation advisor. Date is likely to be the 28th August and venue has still to be confirmed. As the event in Glasgow was cancelled I would like to find out if anyone if there is an interest in Edinburgh before I book.
A warm hello from Scotland, information on some things happening
If you are interested in getting any further information on any of the dates above or to register your interest for the GIRFEC event please contact me at sandra@fragilex.org.uk or on 07825050072.
Glasgow and Surrounding Areas Support Group
We're now Regul at or!
Dates for the year are now organised and we have organised speakers from the Mental Welfare Commission, Family Fund and Advocacy to come and tell us about their work.
We hope will raise the profile and help to attract funding for our work in Scotland.
www.fragilex.org.uk
regist ered wit h t he Scot t ish Charit y
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Charity Updates Congrat ul at ions t o Gil l ian Corbet t , winner of t he Scot t ish Commission f or Learning Disabil it y Inspirat ional Carer Award
Gillian cares for her two adult sons, Chris and Stephen, who have Fragile X Syndrome and live at home. Gillian is a passionate campaigner for disability rights and has taken part in video campaigns to highlight the benefits of Self Directed Support (SDS). Described as ?funny, realistic and down to earth?, Gillian is someone who ?gets on with it?and is an inspiration to others. Gillian delivers training on SDS to other carers and shares her expertise on local steering groups. She supports Chris to pursue his sporting ambitions in the Special Olympics, and Stephen with his love of drama.
Huge Thank you t o Jeans f or Genes for
the
grant towards re-making our educational DVD- we are recording it over the summer and look forward to launching it as part of our awareness day activities. Thank you to all the families taking part and to Hayley and Steve Crawford for all their help and support with this project.
www.fragilex.org.uk
Want ed Down Under Jayne Myburgh is a member of the UK Society (she has a 5 year old son Albie with Fragile X) and is looking to move to Australia. As part of this move Jayne and family have been selected to take part in the BBCs ?Wanted Down Under? where families go to visit Australia and talk about their experiences and decide whether they would like to move out there. The videoing has taken place and we are delighted that this included interviews with some of our friends at the Fragile X Association of Australia. Watch out on our social media for news about when this will be aired! It will be a great opportunity to raise awareness.
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Charity Updates Good Luck and Thank You Sophie
person?s level of learning disability too.
We all want to thank Sophie for the amazing impact that she has had at the charity through her work both as information and Communications Officer, then as Fundraising and Communications Officer. We wish her all the very best in her new role at the National Autistic Society. We are currently seeking a new fundraiser and look forward to introducing you to a new member of our team
We also have a guide to the PIP form 2 if you are applying for the award with a diagnosis of FXTAS and we have an introduction to Attendance Allowance if you are applying for benefits and are 65 and over. Again this is if you have a diagnosis of FXTAS. I hope they help.
"I just wanted to take this opportunity to say THANK YOU to all the lovely families I have worked with over the past 18 months. Through collecting case studies, writing up family stories for the newsletter, and supporting all our amazing community fundraisers I have learnt so much about Fragile X, and leave having known nothing about the syndrome when I started! - as an advocate for raising important awareness and understanding." Sophie Hannah
The Salvesen Mindroom Centre at the University of Edinburgh combines research, assessment, recognition and education to support children, young people and families living with learning difficulties. The work of the new Centre was celebrated at a recent event attended by Her Royal Highness Princess Anne.
Our very own Craig, Gil l ian, St uart and Mat t hew met HRH Princess Royal !
Personal Independence Payment s (PIP) Updat e Hello Everyone Jane here with just a brief note. As some of you are aware there has been a change in two of the descriptors in Personal Independence Payment. I have attached them to the PIP guide or you can download them from the Disability Rights UK website www.disabilityrightsuk.org/ personal-independence-payment-pip
Disability Rights UK have their own guide to PIP which you can download or you can print off Appendices B and C which are the descriptors. The changes concern ?Managing therapy or monitoring a health condition? and ?Planning and following a journey?. For the enhanced mobility rate for ?Planning and following a journey? you must have another reason other than psychological distress for not being able to follow the route of a familiar journey without the help of another person. You can still be eligible for the enhanced rate though because of a learning disability. So when you are describing difficulties you need to focus on not being able to follow directions, cope with a change, processing information, have difficulty assessing risk and danger and/ or are very impulsive. Anxiety and distress should still be highlighted, but, families need to describe the
www.fragilex.org.uk
Around 140 guests attended on the day of the royal event, including the McDonald family, as part of their ongoing work with the Patrick Wild Centre. A great opportunity to raise awareness!
A Day In The Lif e of Fragil e X Megan Lowe has made an amazing video about a day in the life of Max (her cousin with FX) , which you can find on YouTube. "I decided to make the video because I believe that Fragile X is not very well understood and by doing a visual representation of what it is really like to live with the syndrome, people Title: I am Max Megan Lowe may gain a better understanding. Attaching a camera to Max allowed an insight into his life with Fragile X that research and reading on a piece of paper could never do."
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 Tuesday, Thursday, and Friday and 1pm - 5pm on Wednesday's, 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.
Susan Layt on, Cl erical Assist ant susan@f ragil ex.org.uk Contact Susan for membership queries, 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.
Fundraising and Communicat ions 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
inf o@f ragil ex.org.uk Contact the office for enquiries about fundraising, 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 Scot t ish Charit y: SC047332 Company Regist rat ion Number: 6724061
www.fragilex.org.uk
ISSN 1745-1469