Newsletter issue # 83 | February - April
Our New Chairman (Page 2)
Hyper-Arousal (Pages 9-10)
John's St ory (Pages 3-4)
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issue # 83 | February - April
Meet our new Chairman business experience and leadership skills to the charity that is very close to our hearts. I am really looking forward to the next chapter in the Charity?s history. Having seen (partly) where the Charity has come in the past 25 years, I cannot imagine where we will be in another 25 years.
Craig and f amil y.
As the new Chair of the Fragile X Society, I thought I would introduce myself in the latest issue of our newsletter, which I hope you find both interesting and informative! I am Craig McDonald, married to Gillian, and we have 17 year old twin boys (Stuart and Matthew) who both have Fragile X Syndrome. A bit about us first, we live in Peebles in the Scottish Borders. Gillian works for RBS and I work for Lloyds Banking Group. The boys are in 5th year at the local High School which will probably be their last year at school before hopefully going to College for the next chapter in their lives. We have been in touch with the Fragile X Society since the boys were diagnosed in 2008 at the age of 10. I joined the board a few years ago as a trustee/ director to give back some of my time,
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One of our key aims in the immediate future is to continue to build on increased awareness of Fragile X Syndrome throughout the UK and to ensure that there is information readily available to families and professionals who are impacted in some way. This letter is my introduction, and I?d like to think I will provide a regular update on what is happening in the world of Fragile X going forward. Finally, I would like to personally thank Steve Harris for his enormous passion and support as Chair for the past 7 years. He is going to be a hard act to follow, however we have an excellent Board who remain committed to ensuring the on-going ?success?of the Charity. Thanks for reading and I look forward to being your Chair!
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issue # 83 | February - April
Family Stories As some of you may al ready know, l ast year marked t he Societ y's 25t h anniversary - and what an incredibl e 25 years it has been! To cel ebrat e a quart er of a cent ury, we have been reaching out t o you, asking our members t o kindl y share st ories and experiences over t he years. In t his edit ion, we hear f rom Lorraine Peacock, writ ing about her brot her John.
at home. We come as a pair no matter what. After diagnosis I was tested to see if I was a carrier, which I'm not, but it was quite daunting at 17 having all this information thrown at me. A few years after that I discovered The Fragile X Society. It's always been a comfort knowing they're there for support, and it's good to hear how other families deal with living with fragile X. It's not easy looking after with someone with fragile X by any means, and over the years I've lost friends who haven't understood fully the commitment I have to John, but at the end of the day it's their loss.
John cel ebrat ing his 40t h birt hday
"Our fragile X journey as a family hasn't been an easy one. When John was a wee boy in the early 70's his condition was always put down to autism, 1 diagnosis was even Down's syndrome. The doctors told my mum he would never see past 16. Well, he's 46 now and better than ever. John Peacock, aged 15
My mum used to tell me about John as a child, and he was very difficult to say the least, even getting expelled from nursery for 'bad behaviour'. Over the years John attended various special schools but my mum took the decision to take him out due to the treatment of the kids during the 70's. It was 2000 by the time we eventually had a name; fragile X syndrome. By this time John was 31 and our mum had passed away the previous year. I was 17 at the time and made the choice to look after John, although there never would have been any other option, he's my brother and belongs with me
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As a teenager he attended a day centre which he was very settled in due to the great key workers he had. After our mum passed away, as expected, John became quite unsettled as he didn't understand what had happened. It was very difficult to explain to him why his mum wouldn't be coming back.
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issue # 83 | February - April
Family Stories We've had many ups and downs over the years but these days there's very few downs. For the past 20 years John has had small absences which last a few seconds and cause him to go vacant, then afterwards it's like he's on full speed wanting everything done yesterday. He takes epilepsy medication for this on a daily basis but as he's got older this has had to increase. Apart from that he's healthier than me (and also has less grey hair than me!) even though he's 13 years older. We don't know what the future may bring, but as John gets older he's becoming more tolerant of situations that used to get him agitated, including waiting for a bus or standing in a queue. The main thing was when I got married, we thought this would be a very anxious time for him, but he took it in his stride and sat talking to guests and singing along to the music. He gets on great with his new brother in law, as he likes to call him, and loves nothing more than having a bit of banter with him. When you get John in a good mood he'll sit laughing and joking all day - just ask his carers who he has all given nicknames! He also likes to try and pair them off with the nearest person, whether they're married or not, but they all take it in good humour.
He has one to one care after his day centre closed. Due to this I'm able to go to work (as a carer) and John gets to do the daily activities that suit him. He has adapted better than we could have imagined, and his social skills have improved. John needs assistance on a daily basis outside the home. Although he can walk he has no sense of danger around him. Since leaving the day centre he now attends various clubs with his peers, and also tends to an allotment where he grows onions and potatoes, which he is very proud of. John is happy living at home and he wouldn't do well living on his own as he needs help with tasks within the home. He's happy to help out by making his bed and dusting his room, but he's much happier sitting at the kitchen table doing his football cards. We're lucky to have a great team of carers to allow this to continue and hope to have many more years of ups rather than downs. Every day is still a learning curve for us all. and I don't expect that to change, but it's all part of life as we know it".
Thank you t o Lorraine, f rom al l of us here at t he Societ y, f or sharing t his wonderf ul st ory.
John & Lorraine on her wedding day
Got a st ory you'd l ike t o share? Get in t ouch wit h us! Email : inf o@f ragil ex.org.uk
Christ mas Day, 2015
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Or use: # f ragil eXt raordinary
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issue # 83 | February - April
Family Stories Over t he past f ew mont hs t hose of you on Facebook have been sharing some great pict ures and st ories. We l ove hearing f rom you, so pl ease do keep t hem coming in! "My son Sonny, all ready to be a Viking (although he is kind of afraid of the real vikings!) We live in Shetland and next week there is a viking festival called 'Up Helly Aa'. We are "training" Sonny this year, because next year he is taking part in the festival - a very big deal up here in Shetland! Fingers crossed he will be a little less afraid next year!" Ingrid Sim-Whit e
"Ross and I have been together 4 years in March. We have lived together for over a year, and on my birthday in July, Ross proposed to me in the dugout at our beloved football team - Aberdeen Football Club's stadium. And I said YES! We are now planning our wedding and will be getting married in March 2017. Ross has fragile X and life isn't always easy for him, but he does so well. He has 3 voluntary jobs which fills up his week, and he is a very valued member of each of the places he works. He is a very handsome and pleasant man and I can't wait to be his wife. Life isn't always easy, but with a little bit of understanding and patience there is nothing we can't solve together. Ross and I recently spent our first Christmas together at my parents house and it was so lovely and anxiety free. Very proud!"
Jamie Chal mers
"From seeing the first Harry Potter film our son was hooked. He saw them all and knew the names of all the main characters. A visit to Harry Potter World was a must. He hoped to fly but instead did the next best thing and had a photo on a broom! This picture always brings a smile to our faces". Janice Ackroyd
?Alasdair (23yrs) just appeared and asked if I'd like some supper - this has never happened before! I said that'd be lovely. I didn't have a clue what would be presented to me, but could hear him happily singing to himself whilst preparing this surprise supper. And, look what I've just been presented with... crackers with garlic cheese and sliced olives! I got a glass of tonic with sliced lemon and ice too!!? Paul ine Brannan
Find us on Facebook by visit ing: www.f acebook.com/ t hef ragil exsociet y www.fragilex.org.uk
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issue # 83 | February - April
Opportunities to participate in research February 2016
Memory Training and Fragil e X Researchers: Dr Sonya Campbel l , Pat rick Wil d Cent re, Edinburgh Universit y This is a pilot study investigating whether a computer program (which is called Cogmed) might be useful for people with fragile X syndrome. The aim is to find out if 1. 2.
It is practical for individual?s with fragile X to use Cogmed. If using Cogmed might lead to improvement in working memory and attention.
The study is recruiting children and adults with fragile X syndrome aged 4 and above. The study involves completing training on a home computer or tablet for 5-10 minutes, 5 times a week for 5 weeks. During that time you will have three home visits involving some clinical assessments and questionnaires, the first visit would last about 2 ½ hours the subsequent two would be about 1 ½ hours. No travel is involved for those taking part. If you would like to take part or just want further information please contact Dr Sonya Campbell at sonyacampbell@ed.ac.uk or by telephone on 0131 537 6680
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. The 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
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expenses incurred will be refunded. Families will have already had a mailing about this study. If you are interested in finding out more or being a part of the study, then please get in touch with: Stephanie Brown: 0131 s0935170@sms.ed.ac.uk or Dr Andrew Stanfield: andrew.stanfield@ed.ac.uk.
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537
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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. 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. 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
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issue # 83 | February - April
Opportunities to participate in research February 2016 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
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.
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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
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 below: -
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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
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issue # 83 | February - April
Charity Of The Year: Downsend School Earl ier t his year, The Fragil e X Societ y was del ight ed t o be chosen as charit y of t he year at Downsend School in Surrey! St udent Josie Del l , sist er t o Jacob, was t he driving f orce behind t his decision, af t er giving a f ant ast ic present at ion t o t he school 's charit y commit t ee about f ragil e X and t he Societ y's work. Bel ow we hear f rom Robert , t heir f at her, who shares t heir st ory... "Our son, Jacob, was diagnosed at 3 yrs with full mutation fragile X. We knew things were not right; at 3 he was only just walking and was all but non-verbal, with only a handful of words. After a few appointments with the paediatrician, primarily for Jacob?s lack of speech which we thought was due to hearing issues, the paediatrician said she was going to test for fragile X. We had never heard of fragile X, and even after a brief explanation from the paediatrician were still largely in the dark but were told that a diagnosis was unlikely and testing was for the sake of completeness. In the days after that appointment, we turned (as so often you do nowadays) to the internet to try and learn about fragile X; an internet search directed us to the Fragile X Society and their website gave us a very useful introduction into a condition that, like so many we knew nothing about. A few months later Jacob?s diagnosis was confirmed and for a time our world was turned upside down while we struggled to understand the whys, hows and what the present and future held for Jacob. The one constant in what turned into a year of confusion, learning and coming to terms with Jacob?s diagnosis was the information, help and assistance that the Fragile X Society gave us. The Fragile X Society have been the light at the end of a very seemingly long and dark tunnel over the past year. The Society have offered us as parents help and support, they have provided information and assistance and given us much of the knowledge that we have gained over the last year to try and do what is best for Jacob, which in the past year was getting an ECHP, and a place at a school that could given Jacob the best start to his education. They have helped us learn that we are not alone and that there are other parents in the same position; attending the annual conference in Birmingham in 2015 made us realise that there are other families out there going through the same as us, having
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to get over the same hurdles and that there are professionals who are working to help us do that. The Society has helped give us reassurance that as Jacob grows up there is someone there that we and he can turn to for help and that is working to help all those touched by fragile X.
From l ef t t o right : Andrea, Josie, Jacob & Robert Fragile X is not a well known condition, but knowing how important the Society and its staff like Becky and Wendy have been to us as a family, we will do all we can to help them by raising awareness of fragile X and the Fragile X Society. Our daughter Josie is very proud of her brother and, unbeknownst to us had nominated the Society for her school?s charity of the year. Given that there are so many deserving causes, she had to give a presentation to her school?s charity committee who had the difficult task of nominating one charity over other equally deserving causes. We were delighted when the school announced that Josie?s presentation had been so passionate that they picked the Fragile X Society as their nominated charity for the year. Jacob had spent a year at the school?s nursery so they knew first hand what a loving and caring boy he was, and were all to happy to spend a year fundraising for the Charity. Hopefully this will help the wonderful staff at the Society continue to help people with fragile X, carriers, and those that care for them". We are pl eased t o report t hat t he school 's f undraising ef f ort s so f ar have been absol ut el y f ant ast ic! St af f and st udent s have al ready raised t he grand t ot al of ÂŁ3,015 - an overwhel ming amount t hat wil l make a huge and vit al dif f erence t o t he Societ y's work. We l ook f orward t o hearing about Spring Terms ef f ort s, where st udent s wil l begin saving money in Smart ies t ubes, and t el l us t hey are l ooking f orward t o eat ing chocol at e f or good cause! A BIG t hank you t o al l at Downsend, f rom The Fragil e X Team.
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issue # 83 | February - April
Hyper-Arousal In Fragile X Syndrome: What does the research say? Talk by Jane Roberts PhD, Lisa Rague & Anna Porter (University of South Carolina) at Fragile X Society Conference, September 2015. Summary written with Becky Hardiman, Fragile X Society
When people talk about fragile X they often talk about ?hyper arousal?, but what does it mean and why is it important? At our 2015 conference, Professor Jane Roberts talked about the research into this important feature of fragile X. What do we mean by hyper-arousal and why is it import ant ? Arousal is the state of being emotionally, physically and mentally alert and awake. In order to function, it is important that we experience balanced levels of arousal. Having well-controlled levels of arousal is associated with better attention, better problem solving and more successful social interactions. It is important to be alert enough to be able to engage, but too much activity in your body and brain can be overwhelming and make it difficult to function (as described in the top right graph). For example, being ?hyper-aroused? can make it difficult to communicate, pay attention, remember things, or can make you impulsive. Ideally, your typical level of arousal should remain in the mid-to low range but, when there are challenges your body needs to be able to react by increasing arousal to give you the extra alertness and energy you need to engage in the tasks at hand.
What do we know about arousal in f ragil e X? Researchers have looked at arousal in Fragile X by measuring a range of indicators, such as heart activity and levels of cortisol (a stress hormone) in people?s saliva. The majority of the work has looked at heart activity, and listed below are some of the important differences that have been found between children with and without Fragile X: 1) Chil dren wit h f ragil e X t end t o have f ast er heart rat es; -
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What cont rol s arousal ? The autonomic nervous system regulates body functions such as heart-rate and breathing rate. The sympathetic branch of the autonomic nervous system is associated with the ?fight or flight? response (in general, it increases levels of arousal) while the parasympathetic branch primarily controls ?rest and restorative? functions (it helps to bring arousal back down). These two branches work in balance together to regulate arousal.
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Research has shown that children with Fragile X have faster heart rates both when they are resting and when they are being given challenging tasks (including work tasks and social situations). They also appear less able to regulate their heart rate properly to respond to these challenges (i.e. being able to increase arousal appropriately to adapt to the challenge). This has been found in several studies by different research teams. These findings suggest that there is a chronic difference in the sympathetic nervous system in Fragile X i.e. hyper-arousal .
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issue # 83 | February - April
Hyper-Arousal In Fragile X Syndrome: What does the research say? 2) In Fragil e X, t here are changes t o t he syst em f or decreasing arousal . -
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A specific aspect of heart activity, called vagal tone, can show how well the parasympathetic part of the autonomic nervous system (which helps bring arousal levels down) is working. Research generally shows that having high vagal tone allows you to regulate your arousal better to respond to your environment. This regulation has also been shown to be important for social skills. For example, higher vagal tone (when you are resting) is associated with improved emotion and behaviour in childhood. Boys with Fragile X have been shown to be less efficient at decreasing their levels of arousal: they have lower vagal tone and are less able to regulate this system to respond to challenges, when compared to children without Fragile X. This suggests that as well as having too much ?excitation? in their arousal system, people with Fragile X are also, on the whole, less effective at bringing their arousal back down once it is elevated.
How do t hese dif f erences af f ect behaviour in Fragil e X? There have been several studies that have looked at levels of arousal in Fragile X and how it links to important behaviour. -
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Aut ism sympt oms: several studies have looked at whether these heart measures of arousal link to autistic-like behaviours in children with Fragile X. Some studies have found associations but the results are mixed. Communicat ion: Poorer control of the arousal decreasing system (parasympathetic nervous system, measured by vagal tone) has been associated with poorer language production and understanding.
Therefore, there is evidence that arousal differences are important in Fragile X but that there are also other characteristics of Fragile X at play in causing some of the differences seen.
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What int ervent ions can hel p wit h hyper-arousal in Fragil e X? There are several different approaches that may help individuals to better regulate their levels of arousal:
Sensory Int egrat ion Therapy Many individuals with Fragile X show hyper-sensitivity to sensory stimuli (like touch, sound, smell, bright lights etc) and difficulties with integrating information from different senses or blocking out irrelevant information. These features can exaggerate hyper-arousal. Therefore, this intervention (administered by occupational therapists) aims to, in gradual steps, help the person respond more appropriate to sensory experiences. More research needs to be done in Fragile X to examine the effectiveness of this approach, though lots of people report that it can be helpful.
Sensory Diet This involves working with a professional to determine the optimal level of arousal for a particular person, then to structure in activities and interventions through the day to help that person maintain the right level of arousal. This needs to be tailored to the individual?s needs but there is some great information available here: https:/ / fragilex.org/ treatment-intervention/ therapy/ sensory-diet/
Neurof eedback There are some new approaches being trialled (in people with autism, at the moment) which focus on providing feedback information to people about their own state of arousal, to help them to recognise when they are becoming hyper-aroused. Sometimes people may find it hard to recognise the signs that they are becoming hyper-aroused, so they are given extra feedback to help give them an extra cue. The person can then be taught ways to help to calm themself, such as using deep breathing or going to get some quiet space. There is some promising research using heart-rate monitor watches and brain arousal measures in people with autism, so we hope that researchers and clinicians will look to see whether and how this might work for people with Fragile X.
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issue # 83 | February - April
Fragile X Conference in Scotland We are real l y excit ed about t his year?s conf erence in St irl ing. Through t he day we wil l be f ocussing on some of t he key pract ical issues f acing chil dren and adul t s wit h Fragil e X, incl uding educat ion and empl oyment . The day will include a mix of family stories, overviews of fragile X, and speakers talking about accessing services. As well as being a day full of useful information, it is also a great opportunity to meet with others living with or interested in fragile X. Programme: 9.30am
Registration starts and coffee available
9.45am
Crèche opens
10.00am
Fragile X Syndrome and Education - Learning Styles and Practical Strategies Charles Gibb, Educational Psychologist
10.30am
Break
11.00am
Getting It Right For Every Child (GIRFEC) - Ronnie Hill, Scottish Government
12.15pm
Lunch - Crèche Closes between 12.20 - 1.40pm
13.45pm
Introduction to Employment and Fragile X
14.00pm
Supported Employment Scheme - Angie Black, Social Work, Glasgow
15.00pm
Employment Experiences - Two stories presented by people with fragile X and their families
15.45pm
FragileXtraordinary: celebrating members' achievements over the past year
16.00pm
Closing remarks and end of conference
16.10pm
Refreshments
16.30pm
Crèche closes
Booking details and booking forms are included as an insert with this newsletter. Booking is also available at www.f ragil ex.org.uk. The crèche is available at a small charge.
We hope t o see l ot s of you t here!
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issue # 83 | February - April
Charity Updates AKO Aut ism Expo
Wel sh Assembl y
On March 12th our CEO, Becky Hardiman, will be speaking about Fragile X Syndrome at the 2016 Anna Kennedy Autism Expo. Additionally, two of our specialist support workers (Wendy and Jane) will be holding a drop in session at the event, ready to answer any questions you may have. There will be lots of other important topics too, like the transition to adulthood and puberty.
You are invited to an exciting event at the National Assembly for Wales, organised by Eluned Parrott AM and colleagues, with the Fragile X Society. The aim of the day is to raise awareness of Fragile X and the practical issues that individuals and families living with fragile X in Wales face, to influence the policy-makers in the country.
The event will take place at Brunel University, located in West London. Tickets for the event are available at: ht t p:/ / akoaut ismexpo.co.uk/ t icket s/ with a ÂŁ5 discount when bought online. We look forward to seeing you there!
Fragil e X Col l ect ion Boxes... Take a look at our brand new fragile X collection boxes! This will make it easier for those wishing to collect donations from family and friends, at fundraising events, or by placing in local businesses. If you'd like a box, please get in touch via inf o@f ragil ex.org.uk, or call us on 01371 875100
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We are inviting Assembly Members, professionals, and individuals and families living with fragile X to join us for the event which will include: a presentation from our CEO about Fragile X Syndrome and Fragile X-Associated Conditions; a parent?s perspective on accessing services for a child with Fragile X (Lucia Elghali, Director of the Fragile X Society); followed by an opportunity for attendees to discuss issues that they face with their local assembly members. A full agenda will be confirmed closer to the date. The event is free to attend and will include a light lunch.
To sign up, pl ease visit www.f ragil ex.org.uk/ event s, or give us a cal l on 01371 875100 t o order a booking f orm.
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issue # 83 | February - April
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
x £20 x £100, 2 x £50
Congratulations to the following winners: November -
Alan Sharrock Kelly Naylor Lady Elizabeth Edward Mrs Doreen Crowder
December Elizabeth Sutherland Trish Richardson Mr M and Mrs B Jones January -
Joyce and Roger Chapman Michelle James Rita Foreman Bridget Manning
We?d like to take this opportunity to thank the following: Jan Ditheridge, Julie, Darrell, Alex and George Crouch, Sheila Iverson, Carolyn Cockbill, MJ & D Ful l beards f or f ragil e X! Vincent, DS & C Walker, Marie Clark, Clark Crosby, Emily McCarthy, Natalie Riddell, Gemma Wallington, Gemma Grafton-Williams, Jodie Cook, Christine Bradshaw.
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: -
Betty Vernall John Parkinson Alan Williams Mr Jan Adam Sliwa Roger Stanley Owen
Lot t ery Winners! Fant ast ic Fundraisers... In the latter half of 2015, we were lucky enough to be the beneficiary of a whole host of fundraising events! From half marathons, golf days, a fancy dress birthday party, a 'Movember' team, Zumbat hon dress down days, a children?s disco, a tombola, a 'zumbathon', and even a bungee jump, our friends and supporters have worked so hard in their fundraising efforts for the Society.
We are excited to announce this years lottery winners the news we've all been waiting for! Drumroll, please... Prize
Ticket No.
Name
1st - £250
OL 34
Louise Bagnall
2nd - £100
00814
Ross Lander
3rd - £100 John Lewis vouchers
02404
Susan Dellow
4t h - Hamper
03710
Michael + Barbara Jones
5t h - £20 Amazon voucher
04831
Rachel Instone
6t h - £10 Sainsbury's voucher
07829
Viviette Milgate
7t h - £10 Sainsbury's voucher
08891
Michelle Roper
If you're thinking about fundraising, and would like to discuss your ideas, please contact Susan: susan@f ragil ex.org.uk
www.fragilex.org.uk
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issue # 83 | February - April
In other news... We want t o hear f rom you! A message from Sandra, our Scottish support worker: "We want to celebrate your fragile X achievements achievements with you - big or small! I am really keen to put together a presentation for our up-coming conference in Stirling, a celebration of our members with fragile X.
Art Compet it ion Winner... You may remember in our last newsletter our call for entries to our 'happiness' themed art competition. We are pleased to announce Emil y Cl arke as our winner, for her beautiful collage comprised of all her favourite things. Emily receives one of our f ragil e X awareness t -shirt s, expertly modeled below by Becky (our CEO) and Wendy (one of our specialist support workers)
I'd love for you to share anything - a story, a picture, a video clip - whatever is meaningful to them or you. We would really appreciate your support with this. Please do email me at sandra@fragilex.org.uk. Alternatively, you can send your stories to us by post, via our postal address on the back of this newsletter. Thank you in advance for your cooperation!"
Member Inf ormat ion Updat es We are in the process of updating the Society's 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.
Disabil it y and Isol at ion According to new Mencap data, thousands of people with learning disabilities want to spend more time outside their homes. The charity spoke to 338 people aged 18 to 35, and its research found nearly half don't go out with friends as much as they want to. Other findings from the survey included: -
30.1% spent less than 1 hour outside their homes on a Saturday 17.8% feel alone and cut off from other people.
We'd like to hear your thoughts. Remember, the Society is here to assist you in setting up fragile X support groups throughout the country. Please do get in touch.
www.fragilex.org.uk
Don't forget, these t-shirts and other fragile x merchandise are available to purchase on our website through our online shop. They make a great gift, with all profits re-invested into the Society, helping us to continue providing information and support to our members.
Lord Mal com! Just after Christmas, we received this wonderful anecdote in the post, sent in by Ann Newton: "Malcom had his best Christmas present ever this Christmas. Actually the two best presents. His sister and brother bought him two plots of land in Scotland, which now means he is entitled to be called 'LORD MALCOM GARETH NEWTON'. His sister Natalie gave him his present on Christmas morning, and without knowing this, his brother Sean presented with a second plot on Boxing Day. So all over Christmas, when we asked him to do something his answer was... ?We Lords don?t do that? " This really made the fragile X team chuckle - thank you Ann for sharing!
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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.
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
Chair: Craig McDonald Vice-Chair; St eve Harris Treasurer: Isabel Stirling Secret ary: Nerina Dewar Ot her Direct ors: Dorcas Slaney; Reem Waines; Nerina Dewar; Alison Evans; Gaia Scerif; Lucia Elghali; Kathryn Silk; Jo Woosnam-Savage; Becky Hardiman; Sally Hicks; Zoe Carroll;
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 Prof Kay E Davies, CBE, F Med Sci, FRS Department of Human Anatomy & Genetics,
www.fragilex.org.uk
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