Newsletter issue # 94 | Christmas 2018
MERRY CHRISTMAS and a HAPPY NEW YEAR
Inspiring Fundraisers (Pages 10-11)
A Horsey Famil y St ory (Page 4)
www.Fragilex.org.uk
It 's Goodbye f rom Wendy (Page 6)
01371 875100
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issue # 94 | Christmas 2018
Welcome! Chair's Introduction Hel l o al l ! It is with an element of both sadness and pride that I write my final message as Chair of the Fragile X Society. Having spent 3 years as Chair, it is now time for someone else to take on the responsibility that goes with being not just a Trustee of this fantastic charity but to lead the Board of Trustees/ Directors. I will still be on the Board for a further year before I need to automatically step down after a 7 year period. It is safe to say I have really enjoyed my experience, hopefully added value and made a number of friends in my time here - Trustees, families and the team at Great Dunmow. I reflect on many successes and lots of fantastic feedback that we receive as an organisation on a very regular basis. As a parent in a family impacted by Fragile X, I personally know how valuable our service and support can be, particularly in difficult times such as transition, dealing with challenging behaviour or as a newly diagnosed family wondering how Fragile X might change our lives forever. As a charity, we continue to face into some very serious funding challenges, as do many organisations of our size ? grant funding is ever harder to secure and we continue to rely very heavily on all the fantastic fundraising that happens across many of our families. Thank you all for everything you do to help us maintain the services we provide. I need to draw your attention to some very important messages regarding our finances as, at present, we are no longer able to sustain a dedicated fundraising role. In particular, we have a plea to anyone out there who would consider volunteering some of their time to help the charity in a fundraising capacity. If you are interested in finding out more, then please contact Becky (becky@fragilex.org.uk) or me (craig@fragilex.org.uk). In addition, this is our last newsletter which will be printed and posted out to our family members, given the annual cost we incur to do so (in the region of ÂŁ14,000 per annum). We will move to electronic/ digital versions going forward in 2019. As a result, it?s really important we have your email address details on file. Finally, I thank you all for your support to me personally over the last 3 years as Chair. Kirsten Johnson is your new Chair and I am sure will introduce herself soon. In particular, thank you Becky, for all of your sterling support and massive contribution you make ? I have enjoyed working with you, as a Charity we are extremely fortunate to have you as our CEO. Thank you, Craig
www.fragilex.org.uk
/ thefragilexsociety
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We want to keep in touch with you? and we need your help! Update on our newsletter We are proud that we spend our funds responsibly and we constantly consider our services in light of our financial position. As you know, we receive no government funding and rely on generous donations and fundraising. We are grateful for this amazing support which, amongst other things, allows us to maintain our specialist helpline service supporting people with Fragile X, their families and professionals across the UK. However, as with many charities, we face great funding challenges, which means that we need to reduce our expenditure to maintain our existence. It is with regret that we have decided that the cost of our newsletter for our ever-growing membership is no longer sustainable.
Theref ore, t his wil l be t he l ast print ed edit ion of our newsl et t er. However, we are excited to announce that moving forward we will be sending a much more frequent email newsletter, still full of family stories, charity updates and event announcements, information about Fragile X syndrome and services, research opportunities and updates, and much more. You will also be able to access all of this great content through our website (www.fragilex.org.uk), including printer-friendly versions of these articles which can be downloaded and printed for those who cannot access the internet.
Pl ease make sure you have sent us your email address, so t hat we can keep you up t o dat e! We only have email addresses currently for half of our membership. You can update your email by: -
Completing and returning the enclosed form Emailing noel@fragilex.org.uk Give us a call on 01371875100 Visit our website and complete the membership form at www.fragilex.org.uk/ membership
If you are unsure if you have already supplied your email address? please check with us. Better to be safe than sorry! In the future, you will be able to access emails about our AGMs and elections of trustees on our website at www.fragilex.org.uk/ agm
Issue Cont ent s 4
Gill, Ash and their Horsey Story
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Wendy Says Goodbye
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Sarah and FX Blogging!
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FragileXpedition 2018
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Fundraising Updates
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Jil Frey Answers Your Questions
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Research Updates
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Research findings: Temper Outbursts
www.fragilex.org.uk
/ theFragilexsociety
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A Family Story: Gill, Ash and their Horsey story Ash joined our family aged 5. My children were then 20, 18 and 14 and they regularly rode and helped out with a friend?s horses. When Ash was about 8 he began regularly riding Tiny, our friend?s pony. Ash briefly joined a riding school and rode in a beginners group that one of my daughters taught, but we would never trust him to another teacher! Over time, Ash was able to ride more frequently and start doing some more care work for the horses, and he also began to show interest in sharing his sister?s horses. As the year progressed we faced the fact that, by July, Ash would have finished college and could easily become even more reluctant to leave home and do ?stuff?. We were also keen to find opportunities to help him keep fit and active. We thought that horse riding could be just the thing! However, at this point, we didn?t have access to a suitable horse for him to ride. So, we began discussing the possibility of him owning his own horse. Amazingly, the other small yard on the farm became available to rent. We immediately asked the owners if they would hold it for us until I could speak to the finance department, as Ash?s finances are managed under a deputyship arrangement by the Court of Protection. Happily, we were given permission for Ash to pay the monthly rent and we began horse hunting. It took a few weeks of searching? . but when they met Tony they knew he was ?The One?! Tony took a little training, but thanks to my daughters he learned quickly and is a great horse. Ash has responsibility for looking after Tony, with support. He knows how to do all the jobs there: he can feed (though not the making of the feeds as the horses have different mixes and supplements); he can fill water buckets; as well as push and empty wheel barrows. Ashley knows that, before he rides, Tony must be brushed and have his hooves cleaned. Ash starts off, then will just need his work double checking. Ashley knows where all the tack is and can collect and return it to its place in the tack room. We do get him poo picking but his manual dexterity means he actually spreads the poo further? but he has a go!
www.fragilex.org.uk
@Fragilexuk
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A Family Story: Gill, Ash and their Horsey story Ash loves Tony and is so proud that he belongs to him. He rides out in convoy and is able to be independent because Tony is reliable. Currently, Ash usually rides only once a week but we have a couple of friends who love horses but can?t own their own who are happy to ride Tony . The extra work is immense but it?s with a view to next year when Ash is no longer at college. During half term Ash and Tony entered a beginner?s jumping round at some local stables. Ash knows the riding school, but Tony had never been there before. Tony behaved perfectly, as did Ash. It was an open competition, but Ash was the only entrant with a disability. Nik stood in the ring with him just to point out which jump to go to next as Ash doesn?t read letters or numbers. They knocked down most of the jumps, but it was such a brilliant experience and he wants to go again in the Christmas holidays!
Thank you Gill and Ash for sharing your story. We are looking to feature more stories about adulthood and Fragile X on our website and in our eNewsletter: either from an adult's own perspective or from a person who is close to them. If you would like to write a piece or learn more, please contact: jane@fragilex.org.uk or 01371875100.
www.fragilex.org.uk
@Fragilexuk
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Wendy's Retirement "Time to Say Goodbye..." Our wonderful Families and Professionals Advisor, Wendy, is retiring after many years supporting our Fragile X Community. In this lovely piece she reflects back and shares some key lessons for supporting children with Fragile X. We wish Wendy all the very best. We also look forward to introducing Caroline, the new member of our team, in our next eNewsletter. Just over 11 years ago I was working in a special school in North London. A colleague I had job shared with came to me and said ?Wendy, I have found the ideal job for you. It is even based in Great Dunmow.? And so it all began!!! I read the advert for the first paid position of Family Support Worker at The Fragile X Society. The application form and letter took me ages; I was so keen to get it right. The application went in; the interview followed. Then came the call offering me the job. I was absolutely delighted and petrified at the same time. There were things I knew, but lots I had to learn as well! A while later I started, and everybody was so kind and helpful. I was trained by an amazing lady called Lynne Zwink, who many of you will know. Her knowledge about Fragile X was (and still is) boundless. I cannot thank her enough for the time she spent with me and for her support then and ever since. Until I started Lynne ran the helpline as a volunteer, having taken over from Lesley Walker. I know many of you called them when you first got a diagnosis and I know how much help and support they gave families. Sheila Ashe also took calls about adults with Fragile X at the time. It was lovely to meet her and other families when I visited the Surrey Support group in my first year at the Society. I have had a fantastic 11 years and never enjoyed a job as much. It has been a joy to work with all the families, who have contacted me and I would like to thank them all for their kindness and inspiration. You all do a fantastic job, often in very difficult circumstances. It has been wonderful to speak to you all and especially lovely to meet many of you at conferences and at The Thomley weekends. I also owe a huge debt to the society?s professional advisors. I have no medical background and Science has never been my strong point so a big thank you to Professor Jeremy Turk, Dr Andy Stanfield and Dr Angela Barnicoat amongst others for their help and support and answering my (often stupid) questions. On a positive note for them, I bet I sent the easiest emails to answer!!! I must also thank Becky for being a great boss to work for, the present team of directors and those that have served in the past, the team here in Dunmow and Sandra up in Scotland for all your help and support. It is hard to single out anyone in particular, but I do have to just this once. I must pay particular tribute to my friend and colleague, Jane Oliver. Without her experience and support, I would have struggled to do the job on many occasions. Finally, I would like to end by trying to summarise the 4 main things that I end up emailing or talking about in many enquiries. The strategies are not an easy fix for everything, but they do help to keep anxiety levels down for children with Fragile X and that will impact in a positive way on children?s anxiety levels and ability to learn.
www.fragilex.org.uk
@Fragilexuk
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Wendy's Retirement Some final advice from Wendy 1.Visual t imet abl es Visual timetables can be really helpful for use at home and school to let children know what is going to happen. Most individuals with fragile X like to be able to predict what is going to happen and manage changes to normal routines better if they are prepared for them. You can use objects of reference, pictures or symbols to create visual timetables, but it is important to take off each symbol as an activity is finished to give closure.
2. Schedul es Lots of individuals with fragile X find sequential processing or doing things in the right order really difficult. Visual schedules can be a really good way of helping them remember the order in which to dress, use the toilet or whatever.
3. Managing Sensory Overl oad Many individuals with fragile X have problems with sensory processing or managing the wealth of information being transmitted to their brain through their senses. Some will get input from an occupational therapist (OT), but many will not. These are just a few suggestions that have helped some families: -
It can help if children have a known quiet place to escape to when things get too much. This could be their bedroom or maybe something like a pop-up tent. If possible, when you are out visiting, it can help to establish a safe place in that environment. Ear defenders can help if children are noise sensitive
www.fragilex.org.uk
@Fragilexuk
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Wendy's Retirement Some final advice from Wendy -
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Supermarkets are very busy places. I know many families avoid taking their children as it is just too distressing. A good tip I once got was to head for the kitchen rolls and give your child a double pack to squidge. I know another mum who would take her child outside to bounce up and down for a few moments. I know lots of children with Fragile X find jumping calming and many families have found a small trampoline, or trampette, key in helping manage their children.
4. Social St ories Social stories can be a good way of talking through a new experience or helping someone to think of a better way to manage a situation. For those with fragile X they are best written in the third person or using their name .
Please do keep contacting the Society for information and support. I am leaving you in extremely capable hands. Caroline, the new Families?and Professionals?Advisor for children will be working alongside side me for a while before I retire at the end of December. She is a lovely lady with immense experience of supporting families caring for children with a learning disability and I wish her all the best in her new post. All that remains is to say goodbye and to wish the families, staff and directors at The Fragile X Society all the very best. Happy Christmas and all good wishes for 2019 Wendy
www.fragilex.org.uk
@Fragilexuk
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Sarahbobbeal The Story of Sarah's Blog Tel l us a bit about your bl og I made my blog in 2013, then started posting properly in 2015 and my first post was all about Fragile X. I decided to make a blog as I had found others and needed something to fill my time while job hunting. I share a range of posts from beauty, lifestyle, home, advice and Fragile X. I enjoy sharing posts and sharing my reviews. What is your f avourit e t hing t o post about ? I enjoy posting beauty reviews and skincare. I also enjoy sharing posts on Fragile X Syndrome which has helped massively. I'm glad I started sharing posts on Fragile X as I am helping others and I can also relate to others. I also like sharing life updates and how job hunting is going. What is t he most dif f icul t t hing about t he bl og? Thinking of ideas! Finding inspiration and taking photos in the darker weather doesn't work! How do you get ideas f or what t o post ? I get ideas from other bloggers, Pinterest or ideas just come to me when I'm out. Does writ ing t he bl og hel p you in any way? If so how? Yes it does. Sometimes I feel better when I write things down or when I'm struggling with things such as job hunting. What has your most successf ul post been? So far it's one I wrote on Fragile X about being social on and offline. It has over 1,000 views! What woul d your advice be f or someone el se who want ed t o st art bl ogging? Do it! Remember though, you have to have passion for what you're sharing whether that's beauty, books, films etc, to name a few ideas. Don't make a blog just for money (I currently don't make money but maybe one day, mine?s still a hobby). People will know you're only in it for the money you have to be interested in what you?re sharing and show passion. It takes a while to grow but if you enjoy it then it'll be worth it. What are your hopes f or t he f ut ure of your bl og? I am currently heading to my goal of 60,000 blog views! Which blows my mind! I can't believe I'm nearly there! I don't have many followers or get many comments but I enjoy blogging and I'm glad I started one. I don't know what I'd be doing with my time if I hadn't started blogging. I do want to grow my blog but I'm not sure if I want to make it my actual job full time but we'll see what happens. It would be good to grow it though!
sarahbobbeal .bl ogspot .com www.fragilex.org.uk
@Fragilexuk
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# f ragil e
pedit ion
We want to say a huge thank you to everyone who participated in the expedition this year and helped us raise awareness and some vital funds. Together our participants raised over £5,500! There are so many people to thank and here are just a few;
To support the campaign and knock some miles off the target, John Brennan (on the right with his bike) took on the Great Scottish Cycle from Glasgow to Edinburgh on 9 September then, not satisfied with that, climbed Goat Fell on the Isle of Arran on 15 September! And whist he was doing it he and his supporters raised an incredible £2,514.
Mark Smith has done amazing awareness-raising work in his workplace, including sharing a video about his family's Fragile X story, about their journey with PGD (Pre-implantation Genetic Diagnosis: which is In-Vitro Fertilisation (IVF) combined with genetic testing)... and raised £1,009 whilst he was at it. The video is available on our Facebook page and YouTube channel. On 18th October, Luke, who is 8 years old and has Fragile X syndrome, walked through his local town with his class (8 pupils and 7 members of staff) from school to raise awareness of Fragile X. They gave out leaflets about Fragile X to passers-by who wanted to know more. Also, thanks to the lovely weather, they were able to end that walk with an ice cream too: bonus! They collectively walked 22.5 miles which was a great contribution to our # fragileXpedition. Thank you to our amazing volunteers (just a few of whom are pictured on the right) and to Jon Shaw and the Network Rail team who supported our awareness day activities at King's Cross Station on 10th October. It was a great opportunity to speak to people about Fragile X, raise awareness of our charity and to collect funds!
Thank you!
www.fragilex.org.uk
@Fragilexuk 01371 875100
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Inspiring Fundraising Stories
Kailash sent us this lovely story about her daughter: "Vishna is a very kind and loving individual, who is always thinking of other people. In the past Vishna has done fundraising for the Fragile X Society by doing all sorts of amazing things: selling handmade cards, and even running an awareness session at Champneys Spa! Over the past years, Vishna has been saving money which she has been gifted for Diwali, Christmas and her birthday. Vishna generously chose to donate the incredible amount she saved, ÂŁ1500, to the Fragile X Society! This donation supported our recent Family Weekend Conference. In particular, it enabled SpecialYoga to attend to run workshops aimed at people with Fragile X Syndrome and their parents, teaching them practical skills to manage anxiety. Vishna wanted to make this donation as a thank you to the Board of Trustees, the staff, volunteers and Specialist Advisors for all of their hard work and support. Without their dedication, a lot of the Fragile X community would feel isolated, be unable to access information about the latest research and not have access to the helpline run by our Families and Professionals Advisors."
Thank you so much, Vishna!
Spect acul ar Swim-A-Thon! We at the Fragile X Society are as grateful to Lewis Ross as his family and friends are proud of him for taking on a sponsored swimming challenge which ended up raising ÂŁ1,150 for the Society. Lewis was inspired by seeing a bake sale for another charity and told his carer, Mo, ?I would like to raise money, for The Fragile X Society?. With help from Mo, Lewis decided to complete a swimming challenge. Lewis has gone in the space of four years from having no motivation to swim with any particular purpose to making huge improvements in his swimming ability and now stretching himself even further with this swim-a-thon. Lewis is 25 and has combined learning disability and autism. In the run-up to the swim he was anxious and his family and friends all think he is amazing for overcoming this to successfully complete the swim. One factor in Lewis raising so much sponsorship money was his infectious personality. Everyone who knows him wanted to show their support and he even drove quite a hard bargain. When people asked how much they should sponsor him for, he would suggest, ?Give us fifty quid!? Lewis has done something truly amazing in showing what can be done with an inspired idea, belief in himself and the support of family and friends. We are super thankful to Lewis for using his skills and popularity for the benefit of The Fragile X Society, and we wish him well as he continues to become a stronger and stronger swimmer.
www.fragilex.org.uk
Fragile X UK
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Ask Jil: Your Fragile X Questions
Jil Frey, MSW, LCSW is an American clinical social worker
working with individuals of all ages with a variety of social, emotional, and behavioural challenges. Jil has kindly volunteered to discuss your questions and scenarios, particularly those from, or relating to, girls and women with Fragile X. If you would like to ask Jil a question, please contact us, including 'Ask Jil' in the subject.
Topic: Emot ions Q: I struggle with thoughts like: "people don?t like me? and ?I?m not good enough?. I get upset about lots of things. The first thing to remember is that everyone has thoughts like this. It?s kind of a funny thing about being human? we want to connect with other humans, and we hope they want that, too so that we can make friends and new families. It can be helpful to remind yourself that just like hearing a noise and getting startled, because you don?t know if you?re body is safe, worrying about being liked is just your brain getting startled because it doesn?t know if your emotions are safe. The second thing to remember is that because feeling this way is so human and typical, there is no reason to be hard on yourself for having these thoughts. Being worried is very annoying, yes, but make sure you forgive yourself for not always feeling your best. The third thing to remember is that you, as you already are, are enough. You are already a wonderful person with a lot to offer, you are already someone working hard to get even better every day, and you are already worthy of love, appreciation, and respect. Yes, some things are easier for other people, which is frustrating, but the fact that you know what?s challenging for you, means you definitely can think of just as many things you?re really good at, too. Try spending some time thinking about those things, too! Q: My daughter is so lonely and isolated, but she is so shy that she can?t get over this hurdle. There is a lot of information circling around in discussions about parenting that warn of the downsides of technology, but sometimes we forget about the upside! Getting some social conversation going through the use of technology can take off the pressure of our girls going to an unfamiliar place to meet people, or having to think on their feet in the moment in an in-person conversation. Anonymous ?chat rooms? or conversing with strangers should be discouraged, but there are other ways to find safe social links for our girls to practice chatting, such as talking to other parents with children with or without similar challenges and helping the two exchange contact information. Once these connections are made digitally, our girls will have a better idea of what to expect from the other person, and setting up plans becomes easier. Tip: for initial ?hang-outs? the best options are short and structured (seeing a film or playing a board game versus dinner and talking which is more open-ended). Also, if your daughter expresses interest in a specific peer that you do not know, encourage her to invite that peer, along with 2-3 others, to a party or gathering celebrating some kind of holiday or event. It?s easier for young people to accept or decline invitations that seem less intimate (such as a party) as opposed to a one on one ?hang out? which they may feel pressure to accept without feeling comfortable (which doesn?t lead to healthy friendships). www.fragilex.org.uk
@Fragilexuk
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Ask Jil: Your Fragile X Questions Continued Q: I know I take things too literally and I don?t understand what is expected of me. That?s definitely going to happen sometimes, seeing that your brain is trying really hard to make sense of a busy, confusing world all the time. My best advice is that after someone gives you a new instruction (maybe about something you?ve never been asked to do before) repeat back to them what you think you heard, and try to point out the part of the expectation that seems off to you. For example ?Oh, so you want me to put this big box up here on top of the smaller boxes? Won?t that be too heavy?? Also, if you don?t know what?s expected of you, ask! A great way to get used to doing this is to find a phrase that you can memorise and use every time you don?t understand. For example, if you?re stuck standing around, you can ask ?How can I help??, ?Do you need anything??, or ?What should I do next?? It also might be a good idea to request some feedback from others about if you?re doing something correctly if you?re ever unsure. Phrases that can do that are ?Is this right??, ?Do it like this?? or ?Let me know if I should do this differently?. Q: My daughter makes up things up about other people and herself. I'm really not sure what to do. This is not uncommon, and can be frustrating, confusing, and worrisome, but it?s okay! You?re not alone in this concern, and your daughter is not alone in this tendency. The first thing to remember is that our girls are exceptionally perceptive of emotion. That means that when things are said, or events unfold, our girls are naturally most in tune to how everyone in the situation is feeling, versus what they are saying or doing. So, when remembering, the memories of feelings are very clear, but the actual details of what happened are out of focus. That means our girls retell stories that include incidents that may not have actually taken place when they are simply attempting to explain the emotion they remember by reporting that things happened that would clearly explain that emotion. For example, they may remember someone saying ?you?re stupid? when what they really remember is feeling ?stupid? per what the person said to them (though the name-calling didn?t actually happen). In these cases, it?s important to ask our girls what they felt, versus what took place. This allows them to describe what they know best, and often times, regardless what happened or didn?t, feelings are the most important to address, validate and plan for. The second thing to remember is that our girls are very good at mimicking others in order to socially ?keep up?. That means sometimes they may boast about things that aren?t true or change their word choices or statements of opinions depending on who they are speaking with. When it ?doesn?t matter? (ie. There is no grave social consequence to the small lie) let these things go. It really is okay if our girls pretend to have seen a movie they haven?t seen. When these small lies have bigger consequences, let your daughter know what she can say instead when she?s in the situation again. However, the most important thing to remember is that any feedback about these kinds of issues should be given warmly, in private, and in a way that lets our girls know that we understand that they don?t always do these things on purpose. When parents ?call out? our girls, they don?t have the typical teenage or young adult reaction of getting angry at and rejecting the parent? our girls get angry at and reject themselves.
More quest ions & answers at : ht t p:/ / www.f ragil ex.org.uk/ ask-jil -your-f ragil e-x-quest ions
www.fragilex.org.uk
Fragile X UK
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Fragile X Research
NEW Facebook Group f or Fragil e X Research The Fragile X Society has set up a Facebook group all about research into Fragile X Syndrome and its related conditions. The group is for family members and researchers to talk directly about ongoing research projects, how research is done and what research we?d like to see happening. To find out more and to get involved, please go to www.facebook.com/ groups/ fragilexukresearch
Fragile X Research: Opportunities to Participate There are some new projects to be involved in. We also have ongoing projects that still need participants. You will find further details on our website. Just go to ht t p:/ / www.f ragil ex.org.uk/ research-t ake-part Transit ion t o adul t social care f rom resident ial educat ional set t ings f or young peopl e wit h int el l ect ual / devel opment al disabil it ies Research Team: Nicola Elson and Prof. Peter McGill, The Tizard Centre, University of Kent. This study is looking at how young people with an intellectual disability transition into an adult support setting from a residential school or college. Nicola would like to talk to young people with fragile X syndrome and their family carers about their experiences. The interview lasts between 30-60 minutes and can be over the phone or face to face at a time and location that suits you. If you would like more information about the study or to take part, please contact Nicola: Tel: 01227 823955 or email n.j.elson@kent.ac.uk Fragil e X Screening Survey Research Team: Dr Felicity Boardman and Dr Rachel Hale, Warwick Medical School. This survey is designed to explore the views of people living with fragile X syndrome and its associated conditions on the possibility of having a fragile X screening programme introduced in the UK. Felicity and Rachel are inviting family members to complete a survey to express their views about this either online or on paper. If you decide you would like to take part in this survey from Warwick Medical School, please contact Felicity: Felicity.Boardman@warwick.ac.ukor Rachel: R.Hale.1@warwick.ac.uk. There is also the option to complete the survey online (click here) or to complete it over the phone with the assistance of either Felicity or Rachel.
Invest igat ing inf ormat ion processing in adul t s wit h and wit hout t he f ragil e X premut at ion
www.fragilex.org.uk
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Opportunities to participate in research Research Team: Ishita Chowdhury, Dr Sarah White (University College London) and Dr Jo Moss (University of Birmingham). The study is looking at how brains process information. Mothers under the age of 50 with the fragile X premutation are invited to take part in a face-to-face session in London at the Institute of Cognitive Neuroscience, UCL. The activities that you would be asked to do, include completing questionnaires, watching short videos, computer tasks and some paper and pencil tasks. If you would like to participate in this study or you would like further information, please emailIshita or telephone her on 020 7679 1128. Invest igat ing sensory modul at ion and ot her behaviours in girl s wit h Fragil e X Syndrome Research Team: Michelle Marlborough and Professor Chris Oliver, Centre for Neurodevelopmental Disorders, the University of Birmingham. Michelle would like to invite families of girls with a diagnosis of fragile X syndrome (either the full mutation or premutation) under the age of 16 to participate in her study. Parents will be asked to complete an online survey asking questions about the behaviours of their daughters, which will take around 45 minutes to complete. To fill in the questionnaire online please type the following into your internet browser (The password is: cerebra): https:/ / tinyurl.com/ y7wvek5a If you have any queries about this questionnaire, or any difficulties accessing the survey, please contact Michelle Marlborough by email (M.Marlborough@bham.ac.uk) or by phone (0121 414 7206). How does at t ent ion mat t er t o l earning and memory? Research Team: Dr Jacalyn Guy, Elise Ng-Cordell and Professor Gaia Scerif, Oxford University. The aim of the study is to find out how social distractions (like those you would find in the classroom) affect learning and memory in boys and girls aged between 13-17 years with Fragile X Syndrome. For more information about the study and taking part, please email Jacalyn, jacalyn.guy@psy.ox.ac.uk, Elise, elise.ng-cordell@psy.ox.ac.uk, or Gaia gaia.scerif@psy.ox.ac.uk. For families who have already volunteered in studies led by Gaia, the team really looks forward to hearing from families again. THANK YOU TO THE GOLFERS! A big thank you to Andy Bradley, Paul McKeown and everybody involved with the Quainton Golf Society who managed to raise the fantastic sum of ÂŁ1,200 for us. You will read elsewhere that funds are very tight at present and we are so grateful for your support.
www.fragilex.org.uk
Fragile X UK
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Opportunities to participate in research... Continued Fl exibl e schedul ing: Devel oping a new st rat egy f or prevent ing chil dren?s dif f icul t ies wit h changes t o rout ines or expect at ions Research Team: Dr Kate Woodcock and Siobhรกn Blackwell, the University of Birmingham. This is a project working together with parents to try and develop a strategy to prevent the development of some of the difficulties that children can experience with changes to their routines or expectations. Kate and Siobhรกn would like to invite families with children with fragile X syndrome who are aged between 5-12 years. The research involves taking part in telephone interviews and group discussions with researchers, in person at the University or remotely via webinar, and testing the new strategy we develop at home. Families can be involved as much or as little as they would like. Kate and Siobhรกn are hoping to get ideas from as many families as possible. A short video explaining the study is available at the following link: www.katewoodcock.com/ flexible If you might be interested in taking part or would just like to find out more, please get in touch with either Siobhรกn Blackwell on +44 (0) 121 414 3335 or at s.blackwell@bham.ac.uk, or Dr Kate Woodcock on +44 (0) 121 414 6036 or at k.a.woodcock@bham.ac.uk.
Underst anding Social Abil it ies and Aut ism in Fragil e X Syndrome Research Team: Jennifer Glennon and colleagues, Birkbeck Babylab, London. There is an exciting study taking place at the Birkbeck Babylab, London, to better understand social abilities in children with fragile X syndrome aged between 6 and 10 years. The study involves playing games and puzzles, watching television (eye tracking) and wearing a 'science' (EEG) hat. In total, it takes about 2 hours to complete. It's a very relaxed setting - there's no pressure on children to complete any or all parts of the study - and travel/ accommodation expenses associated with your participation will be reimbursed. Also, we test on weekends, as well as week days, so you won't need to miss any school. If you have any questions about the study and/ or would like to take part, I would love to hear from you. For more information and/ or to take part, please contact Jennifer Glennon by email at jglenn01@mail.bbk.ac.uk.
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Opportunities to participate in research... Continued Chil dren and young peopl e wit h Fragil e X Syndrome: Behavioural phenot ype and support needs Research Team: Jen Daffin, and Dr Dougal Hare, Cardiff University. Jen Daffin is gathering information from parents and carers to explore how families are finding the support they receive from services. Using this information she also wants to explore how different people?s FXS difficulties get assessed and supported by services. The findings from this work will then be used to inform how to better design and/ or deliver services to meet the needs of people with FXS and their families. Taking part involves filling in an online survey, which should take no longer than 30 minutes. If you are the parent or carer of a child with Fragile X Syndrome under the age of 16 and you would like more information or to take part, please go to the following website: https:/ / cardiffunipsych.eu.qualtrics.com/ jfe/ form/ SV_8owiZOFkjZXqkSN For more information, please email Jen: daffinj@cardiff.ac.uk.
Ch r ist m as Car ds Available
Ch r ist m as Car ds ar e available f r om ou r on lin e sh op at : h t t p:/ / w w w.f r agilex.or g.u k / sh op Our Christmas cards are a great way to raise both funds and awareness over the festive season!
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Research Findings Reducing Temper Outbursts The PREDICTORS (Parent Resources for Decreasing the Incidence of Change-Triggered Temper Outbursts) study set out to develop and evaluate a set of web-based caregiver training resources aimed at trying to reduce the temper outbursts which some children show following changes to their routines and plans. Specifically, one group of caregivers who took part in the study were trained to use a ?Change Card? to signal upcoming changes to children?s routines/ plans because previous work by our research team suggests that doing so decreases the likelihood that change-related outbursts will occur and also reduces the severity of any change-related outbursts which do occur. In order to scientifically evaluate the efficacy of this Change Signalling strategy in reducing temper outbursts, we compared the severity (i.e. frequency, duration and intensity) of children?s temper outbursts before and after their caregivers had been trained to use the Change Signalling strategy. We also compared any changes in temper outburst severity reported by caregivers in the Change Signalling strategy group to those reported by a comparison group of caregivers who were trained to use an alternative temper outburst reduction strategy. This comparison group of caregivers was trained to plan ahead to minimise unexpected changes to children?s routines/ plans which may cause temper outbursts and to use appropriate ways of communicating these plans to the children they care for, e.g. via the use of visual schedules or calendars on their smart phone or tablet. We selected this Planning Ahead strategy because visual schedules and similar communication aids are routinely recommended and popular in education and other settings for use with individuals who have difficulties with change. Overall then, the PREDICTORS study asked the question: ?how does the use of our Change Signalling Strategy compare with another recommended strategy in its ability to alter change-related outburst behaviours??
Prel iminary f indings f rom t he PREDICTORS st udy 1. Was t he Change Signal l ing St rat egy ef f ect ive at reducing t emper out burst s? Overall, there were no scientifically conclusive differences between the Change Signalling strategy group and the Planning Ahead strategy group in terms of changes in reported temper outburst severity after having completed the online training compared 37) completed the online training. Interviews with caregivers highlighted some important barriers to completion which will be used to guide future PREDICTORS research. with before training commenced. But, some subtle differences between the two training groups were revealed which we intend to analyse on an individual rather than a group basis.
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Research Update
Continued
Notably, however, neither the Change Signalling strategy nor the Planning Ahead strategy led to a significant reduction in temper outburst severity for the groups in this study. It may be that some strategies for reducing change-related temper outbursts are more appropriate for some individuals and/ or situations than others. This is something we would like to investigate in future studies by offering caregivers a range of strategies which they can draw upon. 2. What was caregivers?experience of t aking part in t he onl ine t raining? This question is pertinent since only a small number of participants (10 out of a possible 37). Although accessing the training online was generally quick and efficient, some caregivers felt more supported and motivated by direct contact with researchers. Therefore, future PREDICTORS research will aim to use a combination of online and direct training. -
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Some caregivers were put off by the strategies themselves, finding them either too simplistic, or toosimilar to strategies they had already ?tried-and-tested?themselves, or inappropriate given theparticular child?s age/ ability. On a related point, some caregivers reported that they would have been more likely to engage with the training had they been informed of the theoretical background to the strategies used. Therefore, future PREDICTORS research will aim to enable caregivers to implement the strategies more flexibly to suit them and the children they care for by incorporating into the training information on why and how the strategies are intended to work. Some caregivers suggested that the strategies may be more appropriate for implementation with younger children, which points to a need for early intervention. We have recently secured funding to develop an early intervention strategy aimed at preventing change-related behavioural difficultiesfrom developing by using ?Flexible Scheduling?. If you would like to know more about our Flexible Scheduling Project, which will apply much of the knowledge gained from the PREDICTORS study, or if you think that some of your members would like to take part in this study, please contact us using the details below.
Dr Kat e Woodcock, Principl e invest igat or. Current institutional affiliation: Centre for Applied Psychology, University of Birmingham Tel ephone: 0121 414 6036 Email : k.a.woodcock@bham.ac.uk Thank you: This work was funded by the Baily Thomas Charitable Foundation. Several members of the research team led by Dr Woodcock made important contributions to the project, including Ă ine Fitzpatrick, Jordana McBurney, Clare McGeady, Lynne McGowan, Morgan McKenna, Glenda Preston, Nigel Robb and other members of the team. Several associations supported our recruitment including Autism NI, ASD-UK, Down Syndrome Ireland, the Fragile X Society, the Prader-Willi Syndrome Associations UK and Ireland. The work would not have been possible without the support of families who participated, we are extremely grateful for this support and would like to say a huge thank you to these families. You can watch a video of Kate discussing the findings and applications of their research, recorded live from our Family Weekend Conference on our Facebook Page (www.facebook.com/ thefragilexsociety). There are lots of other great videos from our conference, and more, there too!
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The Fragil e X Societ y ? here t o hel p support you wit h inf ormat ion, guidance and advice
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For individual s and f amil ies - We provide the latest information, resources, literature and publications about Fragile X and enable peer-to-peer support networking through online forums and our family weekend conferences, training and events. We also offer support and opportunities to take part in research into Fragile X Syndrome and Fragile X carrier effects.
For prof essional s - We offer helpline support, resources, e-learning and training to educate about Fragile X.
How t o cont act us You can now contact all of our team via the main information number 01371 875100 - For our Hel pl ine in Engl and, Wal es and Nort hern Irel and Available Tuesday 9am-5pm, Wednesday 1pm-5pm and Thursday 9am-5pm. - Tel ephone 01371 875100, option 1. Email info@Fragilex.org.uk. - For our Hel pl ine in Scot l and Typically available 9am-5pm Monday-Thursday. - Tel ephone 01371 875100, option 2. Email sandra@Fragilex.org.uk. - For f undraising and chal l enge event inf ormat ion and support - Tel ephone 01371 875100, option 3. Email fundraising@Fragilex.org.uk.
One more t hing... As you know, with no Government funding, we depend entirely on voluntary donations so your support really is vital. Without your kind help and support, along with your local knowledge and connections, we couldn?t do what we do, so please keep your eyes and ears open for opportunities to help us raise funds. Please keep look out for local community events and either make direct contact yourself or simply contact us and let us know the details and we will make contact. We would be so grateful and you could be the start of a great fundraising opportunity for us. If you would like any further information on fundraising, volunteering or the different ways you could help support us, please either phone 01371 875100 (Option 3) or email fundraising@fragilex.org.uk
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