Fragile X Society Newsletter February 2018 by Fragile X Society UK

Newsletter issue # 91 | February - April 2018

Famil y St ories: (Pages 3 - 6)

Pl ayt ime wit h Tracy and Mouse! (Pages 12 - 14)

www.fragilex.org.uk

Educat ion and Benef it s (Pages 8 - 11)

New Research Project s (Pages 17 - 19)

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issue # 91 | February - April 2018

Welcome! Chair's Introduction Craig McDonald Hi there ? and welcome to our first newsletter of the year from the team at the Fragile X Society. I hope there is something in it for everyone, and if anyone has any feedback on content they would like to see then please let us know. I?ll start by saying a huge thank you to our interim CEO Steve Harris for stepping in whilst Becky completes her work relating to her PhD. I am sure he never thought that his retirement would be such a short lived experience and that he?d be back ??in work??so soon! There is a lot of exciting things planned for 2018, and in particular there are two things that I?d particularly draw your attention to. The first is the Research event in Edinburgh on Monday 21stMay, where we have been working closely with the Patrick Wild Centre to finalise the agenda and speakers. Further details will follow in due course, but we are also planning on having a family day on Sunday 20thMay in Edinburgh where Jeremy Turk will be joining us to share his experience and insight. These two days will be a great way of bringing a research community together and also families together to share their collective experiences and knowledge. Please watch out for further information over the next couple of months. The second is to confirm that we have booked Thomley Centre again in September for another family weekend. The feedback from last year was fantastic and therefore we have committed to hold another one this year too. Again further details will follow in due course but please pencil in the weekend of the 29th and 30thSeptember if it?s something that will be of interest to you. We also approach the end of the current financial year as an organisation at the end of February. Our annual report and accounts will be produced as usual however it?s fair to say that we have had another very challenging year on a financial front. We operate a very ??lean?? organisation with our expenditure predominantly being our salaries for our valuable but small number of employees. We continue to rely on grant making bodies and family fundraising however it?s definitely getting harder each year to maintain same levels of income. We are looking at new opportunities for fundraising; however that always takes time to come to fruition. On a personal note you might be aware that my wife Gillian was very fortunate to get the sole (and first ever) Fragile X charity place for the 2018 London Marathon which is on Sunday 22ndApril. She has committed to raise at least ÂŁ5,000 for the charity and has a number of initiatives planned to hopefully help get to that figure. In addition and much to the admiration

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Welcome! Chair's Introduction Craig McDonald of Stuart, Matthew and me, she is also in training for it and last week (mid Feb at time of writing) ran just under 25 miles one Sunday morning. I am sure you will all join me in wishing her the best of luck in her quest, both to run the marathon and to raise much needed funds for the Fragile X Society. If anyone would like to sponsor Gillian for the marathon then you can do so online at https:/ / uk.virginmoneygiving.com/ GillianMcDonald4 AND we have Maddie Smith who is an own place ballot runner who chose to raise sponsorship and run for the Fragile X Society. Maddie, thank you. You can support Maddie here: http:/ / uk.virginmoneygiving.com/ MadeleineSmith7 Thank you for your continued support, Craig

Family Weekend Conference, Thomley Centre 2018 As Craig has said above, the Family Weekend Conference will take place on Saturday 29th to Sunday 30th September 2018. Registration details will be in the next newsletter and on Facebook. The event was sold out last time, so please make a note of the dates and watch out for more details in May. We have had a number of requests for a similar event further north and we are looking for somewhere similar, but haven't found the right venue yet. The Thomley Centre comes with trained support staff, indoor and outdoor facilities and reasonably priced catering. If you know of somewhere in the north of England, or south of Scotland, please let us know by emailing info@Fragilex.org.uk.

Issue Cont ent s 4

Story: Mitchell and His Models

Playtime with Tracy and Mouse

Story: Dancing Girls

Fundraising Page

Education in England

100+ Club

Education in Wales

Current Research Projects

Benefits in Scotland

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Family Story: Mitchell and His Models Kerry's St ory

He has also enjoyed the press attention he received in January 2018 from local and national newspapers, as well as worldwide attention online!

This is Mitchell from Newcastle Upon Tyne and he makes fantastic models out of Mini Babybel cheese wax! Mitchell is a talented young man who has autism and Fragile X Syndrome. He began making the models when he was about 12, starting with a stick man, which he built a skeleton on, followed by all the organs. Then he covered it in skin and dressed it in a tuxedo - all out of Babybel wax! Mitchell will never be able to hold a regular 9 to 5 job because of his disabilities so making the models is his life. He does have dreams, though, and would love to create his own cartoons! He has been spurred on by the wonderful comments he has received on his Facebook page (the family tell him about them as Mitchell can?t read or write) and he was thrilled to receive compliments from the creator and cast of Red Dwarf, from Wallace and Gromit creators Aardman Animations - and Babybel even sent him some cheeses and a lovely letter for Christmas 2017!

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Mitchell doesn?t sell or profit from his models. He only creates them to make himself and others smile. He gets a kick out of hearing from everyone who enjoys them. CAN YOU HELP? Yes! People can send their Babybel cheese wax rinds to the address in the pinned post on his Facebook page and share his story and page online. There?s only so much Babybel cheese that Mitchell?s family can eat! Every model he makes, he takes a photograph of then demolishes it to make the next one. The more wax he has, the more models he can make! Search for Mitchell's Marvellous Models on Facebook. Thank you!

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Family Story: Mitchell and His Models Continued

Thank you so much Mitchell and Kerry for sharing your story. We are so grateful.

Famil y Friendl y Lect ure - Prof essor Jeremy Turk and Dr Andrew St anf iel d "Live in Edinburgh" We are delighted to announce that we are holding an informal afternoon event in Edinburgh for families in May 2018. Professor Jeremy Turk will give an overview of Fragile X Syndrome and Dr Andrew Stanfield an overview of research at the Patrick Wild Centre, Edinburgh. Date ? Sunday 20 t h May 2018 Time ? 2pm-4.30pm Venue ? To be conf irmed Email sandra@fragilex.org.uk for details and watch our Facebook page (search for The Fragile X Society UK on Facebook)

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Family Story: Dancing and a Dancing Teacher Gave My Girls Back Their Sparkle! Cl are's St ory In September 2017 my two youngest daughters walked into the Studio S Dance open day at King Edmund School in Essex. They had both had a hard time and their confidence was at an all-time low and, as their mum, I wanted them to get it back. I spoke with the dance teacher, Sophie, and explained all about how Chloe, my youngest, had Fragile X Syndrome and that she struggled to understand instructions. We both knew that, given the chance, both of my girls could do really well, fragile x or not! They were welcomed with open arms even before they had started their lessons and I instantly knew Sophie was the perfect person for the job, so, after the open day, I signed them both up.

One Happy Chloe! That first day, when the girls started, Sophie made an incredibly nervous mum more relaxed. She took the time to talk to the girls and show them the dances when they were struggling. She was patient and understanding with Chloe when she was feeling overwhelmed due to some problems at school. When Chloe didn't think she was good enough for the dance show, Sophie took her by the hand, wiped her tears and said, "Yes you are! You are doing amazing." She then took her by the hand and went through the dance steps slowly with her until she could do them. I can never thank her enough for that. Chloe may not have been 100% there with the dance steps,

Sophie the Dance Teacher!

but that didn't matter to Sophie or me and she still included her in the dance show, which Chloe was over the moon about.

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Family Story: Dancing and a Dancing Teacher Gave My Girls Back Their Sparkle! Continued them the happiness it feels when you are part of a team, of a family even, that works and helps each other. She looks past the disability and shows her students love and support, only ever wanting to see them happy. She goes above and beyond for all her girls and has a heart of pure gold and I, for one, will be eternally grateful to her for giving my girls back their spark. Edit or's not e: We love this story, not just for the happy ending, but because it shows the difference that one special person can make in the lives of our families.

Chloe the Dancer! Sophie only asked for a small contribution towards the costumes. She didn't charge parents for the extra lessons she put on for the show and even arranged for professional photos to be taken of all the girls in their costumes. She won?t let any child feel left out or let parents struggle so won?t even take full payment for siblings. Sophie believes in every single one of her students and treats them with such love and care that they in turn have a love of dance and the confidence to do it.

Do you have a story about your life you would like to share? Email info@fragilex.org.uk.

Your Board Remember that the board members of the Fragile X Society are all volunteers and they work for us all. For introductions to the team, visit www.Fragilex.org.uk/ fxs-board. If you would like to find out more about joining the board or to contact the board members, please email info@Fragilex.org.uk

I decided to write this piece as I wanted everyone to know what a truly wonderful person Sophie is. She has taught my girls so much more than just dance. She has taught Thank you so much Clare and Chloe for sharing your story. We are so grateful.

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Education update Hi everyone, Wendy here. I just wanted to update you on some matters concerning education.

Transf er t o Educat ion, Heal t h and Care Pl ans - Engl and In England, the deadline for transfers from Statements of Special Educational Needs to Education, Health and Care Plans (EHCPs) is 1st April 2018. Lots of local authorities (LAs) will meet this deadline, but some will not. If your child has not made this transfer before 1st April: -

Firstly, do not worry. The LA remains responsible after 1st April for any provision set out on a Statement. It is advisable to ask the LA in writing when your child is going to have an EHCP assessment. If you think the date given is unreasonable you can make a formal complaint. It is essential that an EHCP is finalised well before the end of the summer term for all children/ young people due to leave school/ college this summer. Finally, it is important to know that, even if they are pushed for time to transfer children/ young people to EHCPs, the LA must stick to the rules.

You should get at least 2 weeks' notice before the process starts: -

A meeting should be arranged to make the transfer from a Statement to an EHCP. This could be as part of the normally scheduled annual review. The LA must carry out a full assessment of your child?s needs before transferring them to an EHCP. They should also allow you to ask for additional people to be involved. People involved should be asked to submit new reports. Old reports should not be used as part of the process unless they still apply. The LA should issue a final EHCP within 18 weeks of the start of the process.

We have more information on EHCPs at the office. If you would like a copy please call Wendy on 01371 875100 or email wendy@fragilex.org.uk

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Education update Continued The Educat ion Syst em - Wal es On 24th January 2018 The Additional Learning Needs and Educational Tribunal (Wales) Bill became an Act of Parliament. This will mean changes to the support given to children with special educational needs in Wales. As part of this, Statements of Special Educational Needs are to be replaced by Individual Development Plans (IDPs). There will be a new Code of Practice to ensure that the new system is clear. This will include the right to appeal. Please note that the int roduct ion of t his new syst em does not st art unt il 2020. The estimate is that it will take 3 years to implement fully and should therefore be completed by 2023. Unt il t hen t he current syst em remains in pl ace. It is hoped that the new law will simplify the education system. Key elements of the new system are: -

The term Additional Learning Needs (ALN) will replace Special Educational Needs (SEN) and Learning Difficulties and/ or Disabilities (LDD). Individual Development Plans (IDPs) will replace SEN or LDD plans, including Statements. IDPs will include education, health and social needs plus provision and will go up to age 25. The aim is to increase the involvement of parents, children and young people in planning the support received in education. There is to be a bigger focus on measurable outcomes and high aspirations.

Our thanks to Contact (formerly Contact a Family) for this information. Please never hesitate to contact Wendy for assistance with this or anything else.

We do have information on the current system in Wales. Please do contact Wendy on 01371 875100 or at wendy@fragilex.org.uk if you would like a copy.

www.fragilex.org.uk

Fragile X UK

Scotland: News on Devolved Benefits Ed Pybus, Wel f are Right s Worker: Disabl ed Chil dren and Famil ies, at t he Chil d Povert y Act ion Group Over the next few years payment of some social security benefits will become the responsibility of the Scottish Government. This means some benefits will be paid by a new Scottish social security agency. The Scottish Government may make changes to some of the benefits that they are now responsible for. The Scottish Government has already announced some changes that they intend to make. These changes onl y appl y t o f amil ies in Scot l and. The changes include some of the benefits that provide support to families with disabled children. Carer?s Al l owance is a benefit that is paid to those who care for someone who is severely disabled, including a severely disabled child. The Scottish Government is committed to increasing the rate of Carer?s Allowance for carers in Scotland. If you are a parent who gets Carer?s Allowance you will receive an additional payment from the Scottish Government. At present the plan is to make additional payments twice a year, topping Carer's Allowance up to the same level as Jobseeker's Allowance, currently £73.10 per week. The Sure St art Mat ernit y Grant provides help with the costs of pregnancy or a new baby if you are on a low income.The Scottish Government intends to replace the Sure Start Maternity Grant with a new Best Start Grant from summer 2019. It is planned that this will be £600 for the first child and £300 for subsequent children, with an extra £250 for each child around the age of 3 and another £250 when s/ he starts school. The money does not have to be repaid. You can spend the money on whatever you think you and your baby need most and you do not have to provide any evidence of what you have spent it on. You may qualify for a Best Start Grant if you or your partner have been awarded certain qualifying benefits. The Scottish Government has made a commitment to allow disabled children in Scotland to remain on Disabil it y Living Al l owance until they are 18. Children who receive Disability Living Allowance are currently transferred to Personal Independence Payment (PIP), when they reach 16. In the future, your child may be able to remain on Disability Living Allowance until they are 18. Over the coming years, there may be further changes to these, and other devolved benefits, such as Industrial Injuries Disablement Benefits and Funeral Payments. Not everyone knows what financial support is available and it is easy to miss out on help that can make a real difference. If someone in your family has a disability, it is always a good idea to get a benefits check. You may be able to get a benefits check from your local Citizens?Advice Bureau, from other advice organisations or some local authorities offering benefits checks. The Child Poverty Action Group (CPAG) in Scotland provides a benefits checklist for children with a disability and their families for use by support workers and other frontline staff. It is available for free from our website www.cpag.org.uk/ scotland/ factsheets.

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More News from Scotland Benef it s Sandra here and a warm hello from Scotland (although it is actually snowing as I write this!). I just wanted to update you on a couple of things. You will see that we have included an article on the opposite page by Ed Pybus, a Welfare Rights Officer from CPAG, about devolved benefits in Scotland. Please contact me at sandra@fragilex.org.uk or call 07825 050072, Monday to Thursday 9am-5pm, if you have any questions. I wanted to update you on a new fund. The Independent Living Fund Scotland's Transition Fund provides money for up to a year to help young people aged 16-21 living with a disability to improve their lives. More information, including a useful factsheet from Contact, can be found at: http:/ / ilf/ wp-content/ uploads/ 2017/ 12/ ILF-Scotland-Transition-Fund-Leaflet-201217.pdf http:/ / ilf.scot/ transition-fund

Awareness Workshop in Fif e I am delivering a Fragile X Awareness Workshop for the One Stop Shop for Scottish Autism in Fife in March. Details are below and the session is open to families and professionals. Date ? Thursday 22nd March 2018 Time ? 1.30pm-4pm Venue ? Fif e One St op Shop, New Vol unt eer House, 16 East Fergus Pl ace, Kirkcal dy KY1 1XT To confirm your place, email fifeoss@scottishautism.org or call 01592 645350

Fragil eXpedit ion 2018: Round t he Worl d Over 20 million men and women worldwide are affected or at risk of developing a Fragile X-associated condition, including: Fragile X Syndrome, Fragile X-Associated Tremor/ Ataxia Syndrome (FXTAS) or Fragile X Primary Ovarian Insufficiency. The vast majority of these individuals have no access to diagnosis or support. So, in 2018 we are partnering with other Fragile X organisations around the world to raise awareness by taking on the virtual challenge of travelling the 40,000km around the world, sharing experiences of life with Fragile X in different countries. Watch this space!

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How to Encourage Play and Why it is so Critical to Your Child By Tracy St ackhouse and Sarah "Mouse" Scharf enaker, Co-Founders of Devel opment al FX

"Play is? the principal business of childhood? - Jerome Bruner We have had the opportunity to visit the homes of many families raising children with Fragile X syndrome (FXS). One of the common sites we encounter is a playroom or play area chock-full of every toy known to man. The parents always remark, ?I bought all these toys, but he won?t play with any of them!? This exasperation is likely familiar to many readers. Perhaps the child has one or two favorite toys, but even then, the way he plays may be more limited than observed with typical children. Take Matteo, a 2-year-old boy we visited, who would unload the toy bin and then hide on the couch, feeling overwhelmed. For him, just taking the toys out reached the limit of his ability to play with them. Then there is our friend Nick, an 8-year-old who likes to push cars, but after doing this for several turns, he has no idea how to change it up, keep it interesting, try something new. Individuals with FXS often exhibit limited play skills throughout childhood and even into adulthood. Their parents and caregivers often realize that they need to move them from the couch and the joystick to more active exploration and joyful play, but are at a loss for how to do so. This is a problem, because research has shown us definitively that besides play being fun, children and adults develop and refine many life skills through play. Play allows children to use their creativity while developing their imagination, dexterity, and physical, cognitive and emotional strength, as noted in the American Academy of Pediatrics' report, The Importance of Play in Promoting Healthy Child Development and Maintaining Strong Parent-Child Bonds (2007). Play is not only a means of learning, but a primary way for individuals to manage stress. Play also helps build relationships between children and their parents, caregivers, and teachers. During play, adults have the chance to observe a child?s behaviors and participate in their world. Playtime offers parents and other caregivers a great way to gain insight about a child?s perceptions and feelings, and how they understand the world.

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How to Encourage Play and Why it is so Critical to Your Child Continued However, play is difficult for those who have FXS. Understanding why play is so challenging leads to an understanding of how to address it. For individuals with FXS, one of the most apparent reasons is the presence of motor planning difficulties. Children with FXS may not be able to figure out what to do with a toy (ideation), how to start (initiation), or how to actually manipulate the toy (execution). All of these are aspects of the motor planning process. Despite their motor planning struggles and other difficulties with play skill development, we know that individuals with FXS have strong imitation skills. They also are incidental learners. We can use these talents to help with play development. From our experiences working with hundreds of children with FXS, we offer these suggestions to help guide and support play development: -

Children with FXS often cannot come up with an idea for what to do with a toy. We have to be their model. We have to demonstrate simple play schemas that they can imitate and learn. What is a schema? It?s an idea or action that can be used for fun. It can be a simple, sensorimotor exercise such as throwing a ball, or it can be more complex, such as pretend-eating or being a superhero. Or it can be inventive and creative, such as pretending a box is a pirate ship, and a twig is your sword. Schemas allow for expansion from simple to complex; they are the building blocks of play One schema might be to take the child?s favorite toys (say, three plastic dinosaurs), get yourself an identical set so each of you can play, and demonstrate the dinosaurs going to sleep, waking up and eating breakfast. Being dramatic and silly helps here, as does using a rhythmic voice and the ?same? or similar script. As the child masters and imitates this schema, you can add to it: The dinosaurs can take a ride in a truck to get groceries, or go out to a restaurant for breakfast (after cleaning their rooms, of course!). Remember, having an identical set of toys/ objects for each of you is important. Expanding a schema involves observing what the child is doing and then modeling or providing supports (props, scripts, etc.) that add to the schema and make it more meaningful, lengthier, more engaging, and generally more fun.

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How to Encourage Play and Why it is so Critical to Your Child Continued -

Play comes from understanding the various ?roles? played by each ?actor.? An example is hide-and-seek, in which there are the distinct roles of ?hider? and ?seeker.? The game cannot commence or be successful unless a child can pick up on and then act out these roles. In pretend play, think of 3-5 activities that the prop does in real life, then model each action with a clear ?role? for the child to partake in, e.g., dogs, cars, cooking. Get an adult or other child to model each role, then work with your child until the roles are mastered. Use video modeling to further model ideas, roles, and schemas. In computer games, know the game well enough that you can help define a clear ?role? and structure for your child to ensure success. Exploring and expanding the possibilities of the interaction or object allows the child to understand the potential for action and fun. Play is the child making these possibilities happen; it starts as exploration but expands into more purposeful action. If the child has limited schemas, start by following her lead, fostering exploration, and modeling play. Imitation is the backdrop for most schema acquisition. Since children with FXS often have strength in imitation, this provides a natural means for fostering play skills. Incidental learning opportunities, peer play and a ?floortime? approach can all be used as vehicles for play development. ?Floortime? refers to a specific technique to both follow children?s lead using their interest areas, to engage and help them master their social, emotional and cognitive worlds. This usually occurs when engaged in playful interactions on the floor, but go on to include conversations and interactions in other places. Therapists should utilize a play-based approach, using the child?s interests, because it capitalizes on the strengths of children with FXS while minimizing the direct instruction/ demand that can trigger hyperarousal and anxiety, and thus limit the learning that comes from play. Remember to manage excitement and hyperarousal as you play. Establish a shared affect and connection with the child and use this connection to settle her down before letting the play come to an end.

Originally published by the National Fragile X Foundation. Visit fragilex.org for more information. www.fragilex.org.uk

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Welcome to Our Fundraising Pages In M em or iam Don at ion s

Can you hel p us?

We are touched and grateful for the donations that we have received in memory of loved ones who have passed away:

We need volunteers to place and manage our new counter top collection boxes. It involves as much or little time as you have to spare.

Michael Westney

You really will be helping us make a difference where it counts; in the heart of your community.

Hubert Last

For further information on this and all aspects of our fundraising opportunities, please email

Stephen Cowell David Bailey

fundraising@fragilex.org.uk or ring 01371 875100 option 3

Summer is Coming! Honestly, it is, although it doesn't feel like it as I type. With spring and summer comes peak fundraising season with runs, walks, climbs and cycles all providing great opportunities for some fundraising efforts. We need you, so please do consider running and raising sponsorship for the Fragile X Society. We would be so grateful and would be proud to have you on board. Please also spread the word to any running friends, family or colleagues who may be interested in supporting us.

Th e Kilt w alk Your guest editor Steve here and I am told that I am going to be doing the Kiltwalk in Dundee this summer for the Scottish Fragile X charity, as we are registered in Scotland as well now. More details will appear on our Fragile X Society UK Facebook page as soon as we are registered for the walk. The Hunter Foundation adds 40p to every ÂŁ1 you raise! - which can't be bad. Details available here: http:/ / www.thekiltwalk.co.uk. Our 100+ cl ub is a fundraising scheme with monthly cash prizes. Congratulations to the following winners: -

November 2017: Kate and Kevin Ferguson, Joyce and Roger Chapman, Elizabeth Edward, Robert Joynson December 2017: Catherine Wardroper, Peter Sutherland, Alan Walker January 2018 : Jane Parker, Joyce and Roger Chapman, Rita Frazer, Anne Wright February 2018: Kathryn Silk, Treesa Pilkington, Finlay Lockie, S Bakowski www.fragilex.org.uk

01371 875100

Fundraising Updates 100+ Cl ub Join t oday f or a chance t o win mont hl y cash prizes, whil e support ing t he Fragil e X Societ y! Our 100+ Club has been running for many years and is a great way to support our work. There are 11 mont hl y prizes of : 4 x £20, pl us bumper December prizes of : 1 x £100 and 2 x £50. Every entry is assigned a unique code and entered into a monthly draw. Winners drawn each month win a prize of up to £100! Each entry costs £20 per year (which goes directly to supporting our work) and sign up to have multiple entries and be in with an even bigger chance of winning! As well as the chance of a prize, the regular income from our subscribers is so valuable for helping us to continue our work. The subscription year runs from 1st May to 30th April - though you are very welcome to join at a later date if you have missed the start of the subscription year! The next one starts 1st May 2018. We rely on generous donations and are so grateful to all of our 100+ Club supporters. Good luck to all our entrants in the monthly draws (which take place on the first Saturday of each month), keep an eye out in the newsletter for the latest winners! Our rul es are as f ol l ows: -

The current subscription year runs from 1st May 2017 to 30th April 2018. The draws take place on the first Saturday of each month. You may have any number of subscriptions providing that a separate subscription is paid for each. One draw number will be allocated per subscription paid. Anyone winning in one month remains eligible for prizes during subsequent months. A prize will only be paid to the person to whom the winning number has been given. Subscriptions do not qualify for Gift Aid.

How do I join? Joining is simple! You can download a subscription form from the website. Please complete and return by post or by email to tim@fragilex.org.uk. -

1 entry = £20 per year 2 entries= £40 per year 5 entries= £100 per year 10 entries= £200 per year. You must be over 18 years old to purchase a subscription

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Research Update Opport unit ies t o part icipat e in research One of our charity's aims is to support research into Fragile X, to improve understanding and support for everyone living with the various effects of the Fragile X-associated conditions. Included in this section are details of some ongoing research studies that are seeking participants. All studies have been reviewed and approved by a Specialist Adviser and family members via our Research Committee.

Research int o Famil ies and Support Services 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 t he age of 16 and you would like more information or to take part, please email Jen for a link to the survey: daffinj@cardiff.ac.uk.

Research int o Chil dren and Adol escent s Using "Fl exibl e Schedul ing" t o Prevent t he Devel opment of Disabl ing Resist ance t o Change Research Team: Dr Kate Woodcock and Siobhan Blackwell, University of Birmingham Dr Kate Woodcock and her research team aim to develop a new strategy that they hope will prevent the development of some of the difficulties that children can experience with changes to their routines or expectations. They want to help parents and teachers to structure children?s routines and activities in such a way as children will have the best possible opportunity to develop the cognitive skills that allow individuals to deal with change successfully. This is referred to as "flexible scheduling". If you have a child with Fragile X Syndrome between the ages of 5 and 12 and think you might be interested in taking part in this study, please get in touch with either Dr Kate Woodcock on 0121 414 6036 or at k.a.woodcock@bham.ac.uk or Siobhan Blackwell on 0121 414 3335 or at S.Blackwell@bham.ac.uk

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Research Update How Does At t ent ion Mat t er t o Learning and Memory? Research Team: Dr Jacalyn Guy, Elise Ng-Cordell and Professor Gaia Scerif, University of Oxford 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 girl s aged bet ween13 and 17 with Fragile X Syndrome. For more information about the study and taking part, email Jacalyn at jacalyn.guy@psy.ox.ac.uk, Elise at elise.ng-cordell@psy.ox.ac.uk, or Gaia at 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 you again.

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 bet ween 6 and 10. 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, the team would love to hear from you. Please email Jennifer Glennon at jglenn01@mail.bbk.ac.uk.

Research int o Femal e Premut at ion Carriers Cognit ive Emot ional Dysregul at ion of FMR1 Premut at ion Carrier Mot hers of Chil dren wit h Fragil e X Syndrome Research Team: Dr Nermin Khalil, Professor Jeremy Turk and colleagues, South London and Maudsley NHS Trust The aim of this study is to identify the patterns of coping used by premutation carrier mothers of children with Fragile X Syndrome compared to mothers of children with Down's Syndrome. This study will also look at the possible association of these coping strategies with the presence of anxiety and/ or depressive symptoms. Your participation will contribute important information about the ways of coping that mothers of children with Fragile X Syndrome use when they are exposed to stressful situations and the association of these strategies with anxiety and depressive symptoms. We will also look to the helpful coping strategies that can reduce the risk of developing mood and anxiety disorders. To find out more, email Dr Nermin Khalil at Nermin.Khalil2@slam.nhs.uk.

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Research Update

Behavioural and Emot ional Trait s of Women wit h t he Fragil e X Premut at ion Research Team: Dr Jo Moss (University of Birmingham) and Dr Sarah White (University College London) Project 1: Extending the previous research this project is now looking for women with the Fragile X premutation aged bet ween 18 and 50 who do not have chil dren, to complete a short online survey. The survey takes approximately 40 minutes to complete and involves five questionnaires. There are 2 main goals for this research: to better understand the behavioural and emotional profile of women with the Fragile X premutation; and to see how these traits interact with their wellbeing. This project is run by Romina Sanchez Hernandez (UCL MSc student). Please email Romina at romina.hernandez.16@ucl.ac.uk or call 020 7679 1148 for more information about the project. Project 2: Research has shown that approximately 40% -50% of women with the premutation experience a range of social and emotional challenges. Not everyone will experience these challenges in the same way and this project aims to learn more about the broad array of women's experiences. The team would like to talk to women with the Fragile X premutation aged 18 years and upwards about their personal experiences of day-to-day life and (where relevant) their experiences of caring for a child or children with Fragile X Syndrome. To become involved in this project email Ishita Chowdhury at ishita.chowdhury.16@ucl.ac.uk or call 020 7679 1148.

For f ul l det ail s of t hese st udies, and ot her research part icipat ion opport unit ies as t hey become avail abl e, visit : ht t p:/ / www.Fragil ex.org.uk/ research-t ake-part

We extend our thanks to those who volunteer their time to take part in research. In addition, we thank those professionals and researchers who help to improve our understanding of Fragile X and how best to provide support. Left: Fragile X Research Workshop 2017

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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 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... 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. This is the time to brainstorm with friends, research a few local ideas to keep the momentum going and put plans in place to help us have a fruitful 2018. Maybe there are a few local opportunities you and a few friends could create yourselves, such as a quiz night at your local pub or a charity night at your favourite local restaurant. If the management agrees, and if you can fill their restaurant, they often charge ÂŁ20 per head with ÂŁ10 of that going straight to the chosen charity, although the final pricing depends very much on their menu costs. It is such an easy fundraising event to organise and great fun into the bargain. Thank you so much.

Charit y Regist rat ion Number: 1127861 Scot t ish Charit y: SC047332 Company Regist rat ion Number: 6724061

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ISSN 1745-1469