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Rett NewsSupport today, hope for tomorrow

www.rettuk.orgissue: four/2015reg. charity no: 1 137820company reg: 07339522

IN THIS ISSUE 30th Anniversary Family Weekend Eye-Gaze: A Funding Maze? Airett Congress Review

CELEBRATING OUR

upport today, hope for tomorrow company reg: 07339522

Family Weekend

RETT NEWS · ISSUE FOUR/2015 · IFC HELP SUPPORT US TO HELP SUPPORT YOU

Rett News Contents

Specialist Post Mortem ExaminationsResearch into Rett syndrome can greatly benefit from a specialist post mortem from brain donation. Information packs are available from our office. If you wish to give consent for donation, please contact: Dr Claire Troakes (Coordinator) or Richard Hudspith (Administrator) during working hours on 020 7848 0169/0290. If out of working hours, phone 020 7848 0002 (Institute of Psychiatry) and ask for Brain Bank staff to be contacted. Please remember that although a post mortem is of most value within 24 hours of the person’s death, it is still of considerable benefit if it takes place within 72 hours.

Rett UK, Langham House West, Mill Street, Luton LU1 2NA Tel: 01582 798910 · Direct Support Line: 01582 798911 Email: [email protected] · Website: www.rettuk.org

HONORARY POSTS - Patrons: Ann Clwyd MP, Dame Evelyn Glennie, Gloria Hunniford, Jon SnowPRESIDENT - Yvonne Milne MBE · VICE-PRESIDENT - Lorna JaffaTRUSTEES - Honorary Chairman: Lorna Jaffa · Honorary Vice-Chairman: Hilary Truss Honorary Treasurer: Lucy Duncan · Tim Addison, Pauline Bardon, Michael Britten, Becky Gordon, Peter Oliver, Julie Owen, Robert Valentine, Amber Westmoreland, Susan WestmorelandRETT UK STAFF - CEO: Becky Jenner · Family Support Manager: Julie Benson Family Support Officer: Patrice Hosier · Office Manager: Donna Tinch · Accountant: Sarah Kilcoyne.

Rett News is published quarterly by Rett UKEditor: Robert McKay · Designers: 1st Impression · Printer: Creamers Ltd

The views expressed herein do not necessarily represent the views of the editor or of Rett UK’s officers, members or Board of Trustees. Parts of this publication may be reproduced by permission. Note: Rett UK can accept no responsibility for items advertised in Rett News.

Welcome from the CEO 1Support Round Up – Siblings 2Eye-Gaze: A Funding Maze? 3Eye-Gaze: Two Parents' Experience 5Family Focus – How Rett UK Makes a Difference 6North London BBQ 730th Anniversary Family Weekend 8Fundraising – Falafel Party & Geo for the Chop 11Fundraising Round Up – Thank You All 12Fundraising – Tough Mudder 14Fundraising – Rett Fest & Twisted Cinderella Ball 16Fundraising – Rett UK Needs You 18Fundraising – Might You Be a Rett Champion 19Research 20Airett Congress 24Book Review – Rett Syndrome: Therapeutic Interventions 27Memories – Claire Patterson IBCMake a Donation Form BC

HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE FOUR/2015 · PAGE 1

Welcome from the CEO

Hello and welcome to the Winter issue of Rett News. We are just catching up in the offi ce, following last month’s 30th Anniversary Family Weekend. With over 90 families, additional day delegates

and the professionals, we had over 314 guests for lunch on the Saturday! There is a full review on page 8. We were really pleased at how well it was received and for the complimentary feedback from families. Many thanks to all.We are now planning our next Regional Events, the fi rst of which is likely to be in Scotland in the Spring. We are keen now to ensure that we are engaging with local service providers including health, education and social care, to create a greater legacy to these events. We know that our families need greater support from the people who provide those services where they live.I have been busy doing funding applications to trusts in order to gain backing for our core work but also for developing work to support siblings and older people with Rett syndrome. Preparing trust applications takes time, not only in actually completing the documentation but in waiting for responses; sometimes up to six months or longer. With the government cuts now really hitting hard, the pressure on the voluntary sector to enhance its eff orts is huge.At Rett UK, we are seeing a signifi cant increase in calls to the helpline. Up 77% in the last year, many are related to cuts in statutory services, such as school support and respite services. Coupled with that though, is a much more competitive funding environment among trust funders; one funding body told me recently that it had 300 applications for each funding round but it actually only funds between 4 and 8 projects!So our community fundraising is vital in keeping our services going and we hope that the new fi lm, ‘To Know Her Is To Love Her’, that we made at the Family Weekend, will help raise awareness of our work and attract new support. The fi lm is now on the website and on Facebook. Please share it and help us in achieving a wide circulation.Also new is our monthly E-Newsletter. You can sign up for this on the website and it will be emailed to you monthly with updates on research, funding news, support and links to relevant information that you might fi nd helpful and/or interesting.I hope you enjoy your Rett News. Wishing all our readers a happy and healthy Christmas and looking forward to new developments in support and research for our families in 2016!

Best wishes,

Becky Jenner

KEEP UP-TO-DATESign up for our monthly

E-Newsletter atwww.rettuk.org

RETT NEWS · ISSUE FOUR/2015 · PAGE 2 HELP SUPPORT US TO HELP SUPPORT YOU

Support Round UpBy Julie Benson

Support for siblingsBBC Children in Need, have funded us to provide support to siblings and we are now working in partnership with 'Young Sibs', offering opportunities to share experiences and to signpost them to places to go for help.There are over 600,000 young siblings in the UK – that’s about two siblings of disabled children in every classroom!Growing up with a disabled brother or sister, there are both good and difficult times. When siblings are experiencing difficulties, they may find it hard to talk about how they feel with their parents for fear of upsetting them. Generally, siblings will like being with their brother or sister; sometimes they don’t; this is normal. Siblings are often protective of their disabled brother and sister.

Our first sibling workshop was at our Family Weekend.13 siblings attended, split into two groups, 8-11 and 12-16. We did some really fun activities and everyone joined in and enjoyed the session.The workshop helped identify how the children were feeling. They liked not having to queue at theme parks, getting great holidays and meeting interesting people, but sometimes it feels that it is ‘all about the disabled child’. They said they needed time alone to connect with their parents.The workshop provided a safe place to share their emotions and thoughts, which perhaps they couldn’t with their parents, this was really helpful. Someone felt confident enough to share with us that they were being bullied at school because their sister was different. Due to this workshop we were able to follow-up on behalf of the young person, to share this information and take action to stop the bullying.Sibling workshops will be held at all of our regional events, linking with the local support groups for siblings and young carers.The Young Sibs team provides help and support to parents and professionals. We have leaflets explaining about Young Sibs and if you would like a copy, please contact us or visit the Young Sibs website www.youngsibs.org.uk

Body map activity


Eye-Gaze: A Funding Maze?Helping children with Rett syndrome to communicateBy Julie Benson

No doubt you have heard all about eye-gaze technology and how it is helping people with Rett syndrome to learn and communicate. But for many it is something of a minefi eld in knowing where to start. There is so much information and much of it is confusing; we hope that this article will help identify the routes to accessing the technology, the people who should be involved, how to apply for funding and to acknowledge that eye-gaze may not be suitable for every person.Eye-gaze and eye-pointing are examples of communication where the person fi xes their gaze on a specifi c item to make a choice or looks at an item they want and then back to you, as if to say ‘come on, I’ve made my decision’. Choice making through eye-pointing with objects or pictures is considered low-tech communication and when eye-gaze is used to control a computer and make choices on specifi c computer software it is considered to be high-tech communication.When considering if eye-gaze technology is suitable for your son or daughter a good starting point is to engage with your local Speech & Language Therapist (SLT), who may be based in your child’s nursery, school or local child development centre. If your son or daughter, who may be an adult, does not have a SLT then you can ask a consultant or your GP to make a referral. The SLT will be able to assess your son or daughter’s level of communication, give advice on how to develop their eye pointing skills and will be able to advise as to whether or not they may be ready to start using eye-gaze technology. If you think that eye-gaze technology would be benefi cial, you may ask to be referred to a specialist in AAC (Augmentative and Alternative Communication) who will be able to assess if eye-gaze technology would be appropriate. There are a number of regional AAC assessment hubs across the UK, where children and adults can be assessed, advice given and recommendations made. They will also be able to give advice about funding for the equipment. A thorough assessment is required before applying for funding through health or education services; for more information please see: www.communicationmatters.org.uk The assessment experience can vary depending on who carries it out, with some lasting a couple of hours and others taking place over a number of visits. Some parents have commented that they do not give people enough time to respond and they are often feel pressurised to perform. They are being asked to make one or two options/choices and it may seem they are not being encouraged to explore and learn.


Parents also believe that it takes their daughter/son time to become accustomed to the technology and it should be fun to enable them to engage. Unfortunately, outside influences can also impact on performance, such as health problems, lack of, or poor sleep quality prior to assessment and lack of motivating tasks can mean people with Rett syndrome do not reach the criteria for NHS or education funding. The assessment hubs success rate has very explicit criteria but parents should not be put off going down this route. Some families have been successful. However, many parents are taking the initiative and contacting the eye-gaze providers directly. We have contact details in the office if you would like them. Often they can arrange to undertake an assessment either within the school environment or at home. We would, however, recommend that you do get your SLT involved as part of this process as they should be playing an active part in supporting communication and education even if they have limited previous experience of working with people with Rett syndrome. Whilst some parents have expressed the opinion that they were often left to ‘do it all’ and there could be an improved pathway to access funding, this is a great resource. It is vital that when an eye-gaze machine is purchased that due care and attention is given to purchasing the right software packages to support and optimise their development of eye tracking and learning cause and effect through eye pointing as well as their communication. It is also important that adequate training is provided to you as parents and carers in how to use the software and computer. This may have to be sought from the company you are purchasing the machine from.Following a successful assessment, you may be awarded funding for the equipment through health or education channels. For many parents whose son or daughter did not meet the assessment criteria, they are left with the dilemma of what to do next, knowing that the equipment could potentially be life-changing given the time and appropriate support to use the technology. Some families go on to raise money independently through sponsored events and engaging with local businesses to help them raise the required amounts.

Here is how we can help:We do have information about how to fund-raise and would be happy to share this with parents. Alternatively, there are a number of other charitable organisations that provide grant funds on completion of an application. We have a list of organisations that may be able to help in the office. Please email [email protected]. Another good resource for these grants can be found at www.disability-grants.org


Eye-Gaze: Two Parents' ExperienceEsmé's Story"Our daughter Esmé (5.5yrs) has had her Tobii I-series eye-gaze for 12 months and for the last 6 months has been using it daily at school. Since September this year she has been using it all day, every day in the classroom rather than just for targeted lessons.She has got the hang of it quickly and, using this as well as low tech eye-gaze solutions, she has been

able to demonstrate just how much she knows; turns out it's rather a lot. She's learning to spell, to read and to construct sentences. She can demonstrate that she can do basic arithmetic. She has a way to communicate with not just the adults around her but also with her peers; crucial for a sociable little girl. It has opened her eyes and her mind to a bigger world, one that she can control and with which she can share her thoughts. She is able to express herself and is growing in confidence. This is what we, as her parents, have dreamed of."We fundraised for our own eye-gaze and didn't use a hub. We knew that she was ready to learn and didn't want to lose out on the time it would take to get one on the NHS.”

Molly's Story“Molly had a 10 minute first go at Rett UK's Mirfield event last year. We recorded it on our phone and showed our SALT. She arranged a 3 month trial (which became 6 months) funded by health and education, which then provided the evidence to our local Hub (the ACE centre) which provided the device. This was helped by our SALT believing in Molly and

Molly's ease of acceptance and natural eye-pointing skills. We did games for a few days, then straight on to communication. Very quickly Molly was telling us that she was hungry or tired and she's gone on from there. We think that if you can select cells, that should be the only criterion to access; communication will come when the person is ready. It also has to be appropriate to the person and tailored to their needs and likes. I too couldn't manage one sentence! It’s made the world of difference to our family and especially to Molly who is a happier, much more outgoing child than the one who started nursery with a E-tran frame and some flash cards. Molly had a lovely chat recently with a man who'd never seen an eye-gaze device but just sat next to her and listened to what she said, replied and asked appropriate questions as you would with any 4 year old; something that couldn't have happened without eye-gaze.”


My little girl Chloe was late in being diagnosed with Rett syndrome. She was eight years old before we received a confirmed diagnosis; for many years previously she suffered with a variety of symptoms and at the time little did we know that they were all linked to Rett.When Chloe was born in March 2005, I was a young mother, at university and still living with my parents. Chloe, although tiny, was a perfectly formed and beautiful little girl with blonde hair and big blue eyes. As soon as I laid eyes on her I fell in love but I didn’t really know how to be a mother and relied heavily on my parents to help me and show me how to manage. As the days and weeks after Chloe’s birth passed, I became very poorly and my heart eventually failed; I have since gone on to

have twelve heart operations and have been left completely reliant upon a pacemaker. Reality soon was evident when I realised that I was now no longer an independent girl but a young woman with a life-changing illness but additionally a single mother to a beautiful baby who needed me more than ever. I can truly say that Chloe helped me through those heart operations, that the dark days became lighter and I learned to adapt.Chloe is now 10 years old; she is a happy, bubbly child who, like all girls, is very determined. She has recently been suffering with her third stage regression; for some time Chloe had been walking well, although over the last six months this ability has declined as her seizures have become more common. Chloe is currently having between 50 and 80 seizures per day and despite frequent increases and changes in her medications, the seizures continue to develop. During this time Chloe’s behaviour also dramatically changed. She would be violent and become very angry. I couldn’t find the exact trigger points; often Chloe would go from happy to uncontrollable within seconds. She had remained in mainstream primary school throughout her education but was refusing to go to school, was physically violent towards me in the morning, impossible to put in the car and even at home time Chloe would be negative about her day. Nothing positive would ever happen during the school day and she had no peers, as the gap had become too wide between Chloe and the other children within the school. This was when the Rett UK Family Support Team members really stepped in and became my saviours over the telephone.

Family Focus – A Family StoryHow Rett UK make a differenceBy Sarah Miller

Sarah and Chloe Miller


I spoke to Patrice and Julie almost daily; just having someone who would listen was so important and the advice and support that they both offered my family and me was truly overwhelming. I didn’t know what to do with Chloe and how I could help my little girl through her dark days, just as she had done for me. I spent so much time with Chloe and in trying to help her I neglected my own health, so that before long I was back in hospital suffering from an infection around my heart.The Rett UK team has been my rock; it put me in touch with other families whose girls have severe behaviour changes and it really helped to talk to others who could actually say, “I know how you feel” and truly mean it. Patrice and Julie also signposted me to organisations that could aid Chloe and me; Patrice even attended Chloe’s multi-agency meeting at school by means of a conference call to assist me in winning the argument to have Chloe’s ECHP changed and together we worked to move Chloe to a special school. At the beginning of November I received a call to inform me that Chloe’s EHCP had been changed to 'special' and that our local area school had a place for her and was happy to accept her. Chloe has since started at Forest Way Special School. I’m thrilled now to have my little girl back; she’s happy, cheerful and pleased to attend school. There’s no more fighting to get dressed in the morning and no more negative pickups. She’s making friends and is happy to be in a school where she understands what is going on around her. She is able to access facilities that she has longed for, such as hydrotherapy and music therapy. Her behaviour at home has also improved. As for me, I’m much better than I was; there are still some hills to climb in my treatment but I know that when those dark days come around, Chloe and I have Rett UK’s Family Support Team and for that I am deeply grateful.

North London BarbecueThe annual North London Barbecue took place on 19th July at Mapledown School. Thankfully the weather was kind, although we did have some concerns in the morning that it would rain! We had a superb turnout with 45 people from 12 families represented; our people with Rett syndrome ranged in age from 4 to 37 years of age. Thanks go to Ronnie Jaffa and Jonathan Bardon who valiantly cooked the hamburgers, sausages and chicken. Our families made good use of the excellent playground facilities. Mums and sisters had a go on the zip wire (we won't mention any names), dads and little sisters tried the outdoor musical instruments and many people enjoyed the multi-bikes that seated several of them. Old friendships were renewed and there was much chat. Thanks go to Steve Carroll, the headteacher of Mapledown, who gave up his Sunday to let us into the school.

Anna Campbell with Mr Das


30th Anniversary Family Weekend9th to 11th October 2015

After the best part of year in the planning, the actual weekend fl ew by in what seemed like seconds. We were delighted that it had such a buzz about it and that the hard work of everyone involved paid off .For the fi rst time this year Rett related organisations put on a fi ve-day event at the hotel, with Rett Education commencing proceedings with its conference on the Friday. Rett UK ran from Friday afternoon to Sunday lunchtime, culminating on the Monday and Tuesday with 'Girl Power 2 Cure' delivering two days on Guided Reading, led by Susan Norwell. It was wonderful to be part of the programme and there was a great deal of goodwill among the organisations in sharing the space and making sure that families received the most out of the available time. After a fairly relaxing social time on the Friday evening, with entertainment in the foyer and restaurant area being provided by a magician and a balloon-modeller/face-painter, Saturday morning commenced with Lorna Jaff a, Chair of Rett UK, presenting an upbeat refl ection on the past year and then introducing our keynote speaker, Sir Adrian Bird, who talked about the directions of current research.Our AGM followed, enhanced this year by the opportunity to eat lots of cake! We had a delicious 30th Anniversary cake made and the honour of dividing this up for our guests fell to Lorna Jaff a and Yvonne Milne, our founding president, accompanied by our guests singing 'Happy Birthday to Rett UK!".After the break, we were honoured at Question Time to have a panel of experts in Rett syndrome; it was tempting to lock the doors and keep them there! This was a most interesting and informative session made especially so by having Dr Alison Kerr there who, although now retired, retains a keen interest in developments and has so much experience to share with families.

After the best part of year in the planning, the actual After the best part of year in the planning, the actual After the best part of year in the planning, the actual

Reading, led by Susan Norwell. It was wonderful to be Reading, led by Susan Norwell. It was wonderful to be

After the best part of year in the planning, the actual After the best part of year in the planning, the actual After the best part of year in the planning, the actual After the best part of year in the planning, the actual

Reading, led by Susan Norwell. It was wonderful to be

The cake!


Other presentations on the Saturday were Mike Kerr, talking about 'Primary Care and Rett syndrome'; Hilary Truss and Nicky Tomlinson together speaking on Supported Living and Personal Health Budgets; Dr. Dewar presenting for the first time for Rett UK on Feeding Difficulties and Gastro Problems; Philip Warford on Mental Capacity, Court of Protection and Power of Attorney and Cochavit Elefant on Music Therapy: The Possibility for Expression and Shared Experiences. All the presentations were extremely well received. While our guests with Rett syndrome were entertained and cared for by the amazing team of volunteer carers led by Lesle Coppen, a group of 16 siblings went out for the day to Xscape in Milton Keynes and took part in rock-climbing, bowling and sledging. This was really popular and meant they were able to do something special too.

In the evening, with over 180 guests for dinner, we had to spread ourselves over two rooms using the Seasons Restaurant as

well as the main conference room. While this was not ideal, once the meal was finished everyone was able to share the main room for the disco and dancing. It was a pleasure to see so many Rett girls and women dancing, some into the early hours, with the parents struggling to keep up! The raffle in the evening raised over £1,000, which was fantastic.

With most people looking enthusiastic on the Sunday morning (even if perhaps they did not feel it) we were

thrilled to welcome guest speakers Meir Lotan, Rachael Stevenson, Stuart Cobb and Stacey Clough. Meir presented on The Therapeutic Management of Rett Syndrome with extra time given to his session, which was much appreciated by the families; his knowledge and experience are vast. As well as presenting on Dental Hygiene and Oral Health, Stacey was also good enough to run one-to-one sessions for families; Yvonne Lai, who works with InterRett in Australia, helped in making it a truly international affair.

‘Excellent – they really

focused on my daughter with

amazing responses!’

Parachute entertainment in one of the care rooms

‘The whole team was helpful, polite and

lovely.’


Rachael Stevenson and Stuart Cobb gave a most informative and easy-to-understand presentation on research, current activities and on what are the future possibilities. It was great to have Rachael from Reverse Rett with us. We hope to be doing more collaborative work in support and research through the Rett Disorders Alliance. Other bonuses from the weekend were in having Cindy-Jo Morison, Principal Music Therapist at Northumberland Tyne and Wear NHS Foundation Trust, providing one-to one music therapy sessions, Gilly Martin, a Specialist Physiotherapist, as well as Rob Gregory, Hector Minto and Joe Naraynsingh for Tobii Dynavox, providing one-to-one eye-gaze sessions. There are many people to thank for making this weekend such a success; the hotel staff members who were exceptionally accommodating, the volunteers carers who had such energy and enthusiasm, our office volunteers Angela and Gerda and Peter and Yvonne Oliver, who between them sold merchandise, organised the tombola and ran the 300 Club, the trustees and office staff and Cereta Drewett, who took such wonderful photos which are now available to view on the website. If you were not there you can still access the presentations on the website in the members’ resource section. We also had a small film crew there that have made our 30th Anniversary Film To Know Her Is to Love Her, which is available on our website and on Facebook. The film is a celebration of everything that Rett UK has achieved in the last 30 years, the difference the charity has made to the families we support and our hopes for the blue sky day when we are no longer needed. Until that day comes, Rett UK will continue to provide the services you need and support you every day to address the challenges that caring for someone affected by Rett syndrome presents.

‘Extremely helpful for a

second opinion about any concerns you have but feel unable to ask your

own physio/OT’

‘The care was 100%

everybody here was very

supportive in the care of my

child’


Fundraising

Falafel PartyFor the past few years a falafel party in aid of Rett UK has been the brainchild of Joe Fattal. It is a phenomenal event! Friends, relations, neighbours and friends of friends are all invited to the party, which goes on from breakfast time until late in the evening. This year, son Jon arrived from Australia, son Avi and his wife Georgina travelled from New York and daughter Sarah came back from Guildford. Joe's wife, Sonja, organised huge bowls of salads and masses of chickpeas

were made into paste with different degrees of spiciness. There were pickles, hot dressings and piles of pitta bread and of course, a bar, with Pimms, cocktails, wine, beer and a variety of other drinks. Gazebos are erected and chairs are begged and borrowed from friends and neighbours. All day Joe single-handedly shapes falafel balls and fries them in the hot oil. Visitors come and chat to him as he cooks. The whole event is a very laidback, happy affair and thankfully the party has always been blessed with good weather! This year’s party raised a fantastic £1,437.50. Our sincere thanks go to the Fattal Family for their continuing support of Rett UK.

Geo for the Chop!What better excuse is needed to get your hair cut after three years than doing it for charity! We are very grateful to George Steven, good friend to Lee and Wendy Morris whose daughter Becky has Rett syndrome, for choosing to support Rett UK on 23rd August. George is a long time fan of Glasgow Tigers Speedway owned and run by brothers Gerry and Michael Facenna where Becky’s brother Nick is also a rider. To further show his support George had his hair dyed red before having his head shaved! Raising £1167.50 on Just Giving and a further £862.08 on the day by doing a collection around the stadium. Many thanks to everyone who supported him with sponsorship and also to his boss, Peter Facenna, for helping with his Just Giving page, promotion and sponsorship. In total £2029.58 was raised – what a fantastic team effort all round!

Joe Fattal

'Bad hair day' for George Steven!


Daisy Moat

Thank you all for fl exing your fundraising muscles for Rett UKAndrew Connor completed a 5km 'nuclear blast' race through mud, water and many tough obstacles in honour of his 7 year-old grand-daughter Skye and raised £1,265.00.Ayesha Connaughton completed the London South Tough Mudder and raised £587.50 in honour of her cousin’s daughter Sofi a.Brian Rendell, together with his son Steven and nephew David Ball raised £773.75 in sponsorship in honour of Lacey Ellis, for climbing Scafell, Skiddaw and Helvellyn, in The Lake District.Dave Bowers and Race Horse Pub friends of the Gordon family raised £327.50 by holding a music night in honour of Eleanor.Keeley Rodgers raised £395 in honour of her cousin Sharon, by completing her fi rst half-marathon in Oxford.

Leza, Adam and Jonathon Quinn completed a Tough Mudder in September, raising £493.53. Leza said, “We’re doing this in honour of our beautiful niece Charlie, who was diagnosed with Rett syndrome. Rett UK has been a big support to her family through these diffi cult years and is in need of funding to continue to support other families like ours.”

Poppy Sax entered the Iron Kids 500m race at Wimbleball in honour of her friend Abigail and raised £143. What a Rett Champion!Mark Munns generously completed not one, not two but three challenges in honour of his friend’s daughter Blaise and other Rett syndrome suff erers. Mark completed the Brighton Half-marathon, the Brighton Full Marathon and Man vs. Horse in Wales, raising £1,020.Paula Rowley, whose daughter Hannah has RTT, completed the Bournemouth 10K, raising £461.25. Paula said, “Rett UK has supported us through the ups and downs that we face on a daily basis. This is my opportunity to give something back to it.”

Russell Moat donated £2,066.80 from the fundraising he did by means of his Detailing Addicts Facebook page, in honour of his daughter Daisy. www.facebook.com/groups/detailingaddicts

Fundraising Round Up by Donna Tinch

THANK YOU


Top: Alanda and Jonathan Turner with SophieBelow: Beatrice, Charlotte and Sophie

Stuart Evans completed the Deloitte Ride across Britain on 5th September, taking in some of the country’s most breathtaking landscapes. He began at Land’s End in Cornwall, cycling over Dartmoor, Shap Fell in The Lake District, Penrith, Glencoe and the stunning scenery of the Scottish Highlands and raised £1,320.

Ronnie Bergenthal cycled from London to Paris in support of Rett UK and raised £1,455.87. Ronnie said, “Last year I achieved what I thought I would never achieve; running the marathon in Berlin in memory of my dad. Unfortunately, long-distance running caused problems for my back so one marathon was enough. This time, I decided to raise money for a worthy charity that does everything it can to make the lives of those afflicted with this incurable condition and their families a little better. It is a small charity and needs support as it does not have the high profile or resources of some of the larger and well-known charities. The ride itself was hard going but for a very worthy cause!” Sally Pymont completed the London Parks Half Marathon in honour of her good friend’s niece, Sofia and raised £747.50.Sophie Russ completed the Cardiff Marathon and raised £345.Paul Grundy completed the Tough Mudder North West in honour of his Princess, Katie raising £305 for Rett UK.Mark Hodgson completed the Stockport Hatters half-marathon in honour of his daughter Jessica, raising £357.50 for Rett UK.Alanda and Jonathan Turner ran the Chelmford Marathon and raised £5,692.85. Here is an account by their niece, Charlotte Turner, aged 13, of the day: “On Sunday 18th October my aunt and uncle, Alanda and Jonathan ran the Chelmsford Marathon, which was a distance of 26.2 miles. We made a banner for them to show our support and they said it helped them not to give up! This was their first marathon and they were doing it in honour of of my sister Sophie, aged 15, who suffers with Rett syndrome. They managed to cross the finish line with an amazing time of 4 hours, 31 minutes. It was lovely to cheer them and many other runners on and to see them all supporting their favourite charities. They managed to raise a staggering total of over £5,000 for a charity that means so much to our family. They should be extremely proud of themselves, as I am and I know my sister and lots of other Rett girls are very appreciative of what they have done. As they crossed the finish line, Sophie was there to watch them and cheer them on. She was very smiley, as the pictures below are showing.” Our thanks to Alanda and Jon and their generous supporters, including Jon’s employer, ING.

Rett Champions Emma Durant and good friend Gemma Basstoe signed up to a Tough Mudder in support of Rett UK, as Emma’s sister Claire has Rett syndrome. Together they have raised an astonishing £6,536.18. Our sincere thanks go to Emma and Gemma and their amazing supporters, including Emma’s employer Wood Mackenzie. Here is what Emma had to say…“We're alive and although a bit battered and bruised, we're both in one piece with no broken bones (apart from maybe a toe, but who needs those anyway?)! After four gruelling hours we collapsed over the finish line after completing every obstacle successfully, with only one meltdown. After warming up for 15 minutes with 80s dance moves and then forming a 200-strong human pyramid to 'bond' we made our way to the start line. Alas, before you can even get there you have to get over a six foot wall. Confidently I took a run at the wall, hit it and fell back down on the same side. I suspected that I was going to die. After being propelled over, we chanted the 'mudder pledge' with our hands over our hearts and jumped up and down shouting 'hu-rah, hu-rah'. I could practically smell the testosterone and I was already out of breath – I was definitely going to die. 1.5 miles in – Arctic Enema – MELTDOWN. I just couldn't do it – as I approached, I started to panic – why would anyone in their right mind throw themself into a large container of muddy ice water? No! No! No! (at this point I was ascending the steps). "Nope, I'm definitely not doing it," I told Gemma (now I'm sitting on the edge of the slide). Did someone say go? I let go and plummeted. I couldn't breathe and it was so cold that it hurt. I hauled myself under the tyres in the middle, got out of the other end and, miraculously, FELT LIKE SUPERWOMAN. I can honestly say that it was almost worth it…. almost! Onwards and upwards, we carried on with the course, conquering monkey bars, mud and nine-foot slanted walls, until we reached 'Pyramid Scheme', so named because you have to create a team pyramid to make it to the top. My most inelegant obstacle? I stood on someone's shoulders, reached up and hoped that my brother and his burly friend would manage to pull me up. The result was my legs flailing helplessly while I apologised to them both for not dieting more. The unconventional but effective fix? I grabbed my brother’s head and used that to get myself to the top; problem solved.


Tough MudderBy Emma Durant

From left: Gemma Basstoe, Claire and Emma Durant


Fast forward to mile 11. By this point I've crawled under barbed wire, wiggled through shoulder-width tubes, jumped from 15 feet into a cold pool and army-crawled through Tough Mudder's equivalent to tear gas. I'm tired, emotional and I definitely don't feel like sprinting up a 15 foot half-pipe that's been aptly named 'Everest'. Attempt 1. I run, I make it halfway up the pipe and grab a loose rope. Other mudders start to pull the rope up to get me but they don't have a good enough grip and down I slide, face-down to the bottom. Oh, the shame! Attempt 2. I run, I make it nowhere near and do the slide of shame for the second time. Attempt 3. It takes me ten minutes to recover enough to run at all. I go; it takes literally everything I have to make it halfway up to my trusted rope. This time my other mudder teammates get a good grip of me and after much effort they pull me over the wall; I sit there for a while dreaming of the curry to come that evening.Finally we reached the last obstacle, Electroshock Therapy, because we all love to be electrocuted (apparently it's good for cellulite?). Looking through the wires you can see other happy mudders being granted their orange headbands and you know that all that's between you, your headband, beer, free t-shirts and a nutty snack bar are 300 dangling wires each hosting 10,000 volts of electricity. We counted down from 3 and ran hell for leather to make it to the blessed other side. Using Ninja skills, which I never knew I had, I made it halfway across without getting hit, then, BAM!, straight in the back; at least it propelled me forward and nearer to the end. Next I knew, it was all over and Gemma was assuring me that she was 'never doing that again' while I clung to her, sobbing (with pain) and laughing (because I was alive). Joking aside, at the end of the day it was the donations and the thought of where the money was going that really kept us moving when it got tough – and it did get very tough at times – so we have you our lovely and generous family, friends and colleagues to thank for that. If you're ever thinking of signing up for this or any other event, I would 100% recommend raising money for Rett UK for your efforts, the encouragement it gives and the feeling when you cross the line is truly unlike any other.”

Gemma and Emma bravely endured every obstacle. Well done, to you both! We are very proud of you.


Rett Fest & Twisted Cinderella BallRett UK is most grateful to Katie De’Ath, who organised two fundraising events this year, with proceeds going to Rett UK and other charities.

In July, after weeks of planning and hard work, Rett Fest, a family fun-day event, was held at Allenbury’s Sports and Social Club in Ware. There were fair rides, stalls and live bands, among other attractions, hundreds of people came on the day and the weather was beautiful. Katie commented, “We were absolutely astonished at how many people turned up and the feedback from

everyone who attended was overwhelming.” Sincere thanks to everyone who came along and supported Katie and the charities. Rett UK was delighted to receive £850 raised at Rett Fest.Katie’s wonderful family and friends, including Bridie Banks-Harvey and Louise Prior, who run an event company (Sovereign Weddings), helped her plan the Twisted Cinderella Halloween Ball, held at the Manor of Groves Hotel in High Wynch. Katie reported, “I had a great night out, something that doesn’t happen often, having a child like Florie. It was all the more for seeing my family and friends who support us; some I've never met, some I don’t see often enough and some that are there time and

time again. The entertainment at the ball was brilliant and I cannot fault any of it! Stephen Glithero set the evening up with his swing music and we had so many compliments. It was really good!. Dolly Bailey was just fantastic; what a voice to get the party started! DJ Ross Mac was fabulous and my feet were so sore from dancing. The dance fl oor was rammed! Still, what a way to fi nish!” Katie went on to remark, “Each of the organisers either donated their time or put into the charity pot. I am so grateful to you all for giving up your evening for us! This is not only the last event of 2015 but it’s our last one for a long while. We have spent three years raising vital awareness and fundraising and have collected well over £30,000 for Rett Syndrome charities and a few others that support us as a family. We hope to do another Rett Fest in 2017 but for now we are stepping back to concentrate on Florie and our family. I just wanted to say a massive thank you to everyone who attended our ball! It’s so encouraging to hear how great a night everyone had.”Katie wrote of their supporters, “We can't do it without your support, so THANK YOU! £3,500 was donated from the ball to Rett UK”.


Again, thank you so much Katie, Adam and all your fantastic supporters, Rett UK really does appreciate all your hard work and support. You should all be extremely proud.

RETT UK NEEDS YOU!

Fundraising Challenge 2016Are YOU up for a challenge? Following the success of the Three 9s abseil challenge last year, it was suggested that we should do something in a similar vein and White Water Rafting was a popular choice. This year's event has been planned for Sunday 14th May, 2016. It will take place in the Lee Valley Water Park in Hertfordshire, a specially designed course for the Olympic water sports in 2012. Each raft takes up to nine people and is steered by a member of the Water Park Staff . Six rafts start the course every hour. The whole event, which includes a safety briefi ng and time to put on a wet suit, takes about 2 hours. The cost to take part is £35 per person and the suggested fundraising target is £200. The minimum age to take part is 16 and there is no upper age-limit. Jerry Henderson, who has already been white water rafting on this course says, "It's exhilarating! It's a great day out!"There is a café in the water park and a number of local pubs locally where we might get together and unwind after the event. If you would like to take part, please send £35 to the Rett UK offi ce to book your place on a raft.


Good luck!Good luck and thank you to our fundraising supporters, with events coming up over the next few weeks:Jenny Collier and 12 friends:Milton Keynes Winter Half Marathon for Jenny's daughter Phoebe.

Thank YouThank you to everyone who has supported Rett UK over the past year. Like many charities we receive no government or NHS funding to carry out our services and rely entirely on donations

Might YOU be a RETT Champion?If you are feeling motivated to run, why not contact the offi ce. Contact [email protected] for more information or phone 01582 978 910. If you’re thinking that either your running days are long-gone or were never there, then why not support Team Rett by sponsoring one of our runners? You can make a donation online via www.justgiving.com/rettsyndrome or send a cheque to our offi ce address.

2016 Running EventsParis Half Marathon6 March 2016www.semideparis.com/us/homepage.html

Plymouth Half Marathon17th April 2016http://www.rettuk.org/event/plymouth-half-marathon/

Manchester Marathon10th April 2016 http://www.greatermanchestermarathon.com/

Milton Keynes Marathon2nd May 2016http://mkmarathon.com/

mk-marathon-2/

Vitality Run Hackney

8th May 2016www.rettuk.org/event/vitality-run-hackney/

The Country Wide Great Tour4th-6th July 2016www.rettuk.org/event/the-country-wide-great-tour/

www.rettuk.org/event/

the-country-wide-great-

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Colour Vibe Bristol9th July 2016www.rettuk.org/event/colour-vibe-bristol/

Colour Vibe Edinburgh 17th July 2016www.rettuk.org/event/colour-vibe-edinburgh/

Morrisons Great North Run11th September 2016www.rettuk.org/event/morrisons-great-north-run/

Run to the Beat – London13th September 2016www.runtothebeat.co.uk/Event

Chester Marathon 4th October 2016www.activeleisureevents.co.uk/marathon



Who? David Millar and Angus Clarke

What? Pilot Research Projects in Cardiff Medical Genetics

When? Commenced 2009

We would like to update Rett UK on the progress we have made with a small pilot project pursued with funding from Rett UK in 2009 and which we have just agreed an extension to 2016. We have explored the potential of three diff erent areas of laboratory research:1. FOXG1 mutations. We searched for FOXG1 mutations among a large number of samples sent to our laboratory for ‘Rett syndrome gene testing’ but in whom we did not identify a mutation in MECP2 or CDKL5. Along with support from the FOXG1 group, this has allowed us to compile a report (shortly to be submitted to a medical journal) on the range of FOXG1 mutations found in UK patients and their clinical features.2. Our iPS cells project: establishing stem cells from the blood or skin of patients with Rett syndrome. This has been the most useful of the three pilot projects. Initially, we tried to establish stem cell cultures from the blood cells of patients but found this diffi cult. We have

since switched methods and have had much more success using skin cells (fi broblasts) and deriving stem cells (iPS cells) from them. We have several iPS cell lines from patients with mutations in the MECP2 and CDKL5 genes and are about to set up additional cell lines from patients with FOXG1 mutations. With collaborators in Cardiff University, we are converting these iPS cells into nerve cells and then studying these patients’ nerve cells (obtained originally from skin cells) to examine their pattern of growth and contact, electrical activity, mitochondrial metabolism and cell growth control (looking at the mTOR pathway). We hope to compare the function of the cells derived from patients with MECP2, CDKL5 and FOXG1 disease, to learn about the similarities and diff erences between the three conditions.

ResearchHere we aim to bring you the latest research news from around the world.

Angus Clarke


3. We looked into the possibility that small RNA molecules might play an important role in causing or modifying the eff ects of Rett syndrome. These microRNA molecules bind to messenger RNA molecules that produce proteins, such as MECP2, and inhibit their production. Our results were somewhat disappointing: we did not identify any changes that appeared novel or important.To take this iPS cell work further will require additional support and we will soon be looking for possible sources of funding. We think that the work on iPS-derived nerve cells from patients has great potential for developing our understanding of the three related conditions and working towards rational therapies for all of them.

Who? Newron Pharmaceuticals

What? Announces Planned Pivotal Trial Design for Sarizotan in patients with Rett Syndrome

When? October 28th 2015

Following on from the article in the last Rett News, we are pleased to be able to give you an update from Newron Pharmaceuticals S.p.A. which announced during Rett syndrome Awareness Month the study design and details of its planned trial for Sarizotan for the treatment of patients with Rett syndrome. The planned international trial with Sarizotan is a double-blind, placebo-controlled effi cacy (how well it works) study that has been designed based on discussions with regulatory authorities in Europe, the U.S. and Canada as well

as consultation with an international group of physicians specialising in Rett syndrome and a leading advocacy group at Rettsyndrome.com. “Newron is focused on the development of Sarizotan to reduce key symptoms of Rett syndrome, such as episodes of apnea, hyperventilation and abnormal heart or brain rhythms, which are a leading cause of death for patients with the disease,” said Ravi Anand, M.D., Chief Medical Offi cer at Newron. “As we prepare to begin this clinical trial, we are encouraged by the views of Rett syndrome experts that our preclinical data suggest that Sarizotan could demonstrate improvement in these key symptoms.” “A reduction in respiratory symptoms would be a meaningful benefi t for patients and caregivers, improving quality of life and potentially reducing secondary cardio-respiratory complications, thereby extending the lives of girls and women with Rett syndrome,” said Daniel Glaze, M.D., neurologist, Professor at Baylor College of Medicine, and Medical Director of the Blue Bird Circle Rett Centre and Texas Children's Sleep Centre.


The 24-week study is designed to evaluate two fixed-dose groups (5 mg. twice daily and 10 mg. twice daily) vs. placebo for efficacy (respiratory functioning), safety and how the drug reacts in the body in initially 90 Rett syndrome patients, 13 years of age or older. After 24 weeks, all study patients will be placed on Sarizotan and continue in an extension study for up to 48 weeks, with at least 30 patients per group. Respiratory function will be measured using the BioRadio™ system for at-home monitoring. The primary endpoint of the study is a reduction in the number of apnea episodes. The European Commission and the U.S. Food and Drug Administration (FDA) granted Orphan Drug Designation to Sarizotan for Rett syndrome earlier this year.

Who? Dr Jo Hope

What? Online peer support: A medium about to come of age?

When? October 2015

My research explored the role of online peer support and information in caring for a child with Rett syndrome. Online peer support sources include Facebook Groups, email groups and other places where parents can communicate with other parents online. Survey results (190 responses) showed that the younger the child, the greater the likelihood their parent had ever visited an online peer support source. Parents of children were also most likely to rate them as an important source of information, but why?

Similar concerns, different mediumsInterviews with 20 parents suggested that while each interviewee’s experience was unique, certain kinds of information and support could be sought at key stages from available online, offline, peer and other sources. For example, some interviewees described a period of intensive research about Rett syndrome around the time of their child’s diagnosis. Survey results showed a rise in the use of online information and advice with each new cohort of parents, but also a continued use of local groups, telephone support and local health professionals. Therefore, although online peer support is becoming more popular among parents of younger children it has not replaced more traditional sources of support and information.

Amassing expertise and networks of supportInterviewees told me that as they learned more, their use of different sources of online and offline sources became more specialised. Networks were narrowed over time to trusted professionals and a smaller group of peers while information seeking focused on needs as they arose, such as particular health problems. Thus parents’ use of online – and other – sources of information and support varied according to need and access to alternatives.

Jo Hope


Online peer support had disadvantages, such as confl icts about fundraising and a diffi culty in fi nding relevant information, particularly within Facebook Groups. Nonetheless, interviewees with children used online peer support – among other sources – to learn about education, health problems, services, specialist equipment, daily caring ideas, medical information and research and treatment developments. Interviewees with adult children had already amassed greater expertise and tended to use existing contacts for new advice. Online peer support sources were perceived by these parents as dominated by parents of younger children, with very diff erent needs. Thus, parents of adult children described primarily using online peer support to stay abreast of research and treatment developments. It seems likely that online peer support will grow and develop with its most active current users and come of age as their children do.

Useful resources and further informationPlease visit my research website for links to a range of relevant sources of online support and information (from parents and from organisations), more detailed fi ndings and a list of publications from this research: https://rettonlinesupport.wordpress.com If you have any comments, suggestions or thoughts, feel free to email me at [email protected]. My research could not have happened without the support of Rett UK staff and members. Thank you so much for generously sharing your time and expertise.

Keep up-to-date with the latest research news from around the world

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published on Friday 11th December. Full of information on support, fundraising and events that might be of interest, we hope that the E-Newsletter will be a good way for you to remain up-to-date. Information will have hypertext links through

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To celebrate the 25th Anniversary of the Italian Rett Syndrome Association, a European Congress was held in Rome. The congress was attended by 410 people including 30 people with RTT. Speakers and delegates came from as far away as Japan, Australia and the USA. Rett UK was represented by Yvonne and Chris Milne and Lorna Jaff a. The packed programme comprised two parallel sessions running simultaneously. One session involved more scientifi c information while the other was aimed at parents, therapists and teachers. Each speaker was given 20 minutes for their presentation and at the end of each session time was given for questions and discussion. The programme and videos of the Congress will be available shortly on its web site at www.airett.itDuring the congress, time was built in for networking, so families and professionals had the opportunity to share ideas and get answers to diffi cult questions. Rett Syndrome Europe managed to squeeze a meeting into one of the lunch breaks. Representatives of 20 countries took part and heard about the work that RSE has been doing during the year. Two events are planned for 2016. The Russian Rett syndrome Association will hold a World Congress in Kazan from 13th to 17th May. From 15th to 17th September, an event will be held in Vienna to celebrate 50 years since Dr. Rett published the fi rst papers on Rett syndrome.

Take Home Messages from 4th European Congress on Rett Syndrome, 30/31 October/1 November 2015 By Yvonne Milne

Meir Lotan Highlighting the importance of walking for all Rett people. WALKING IS VITAL FOR PEOPLE WITH RTT. Part of the presentation was the same as Meir did at the Rett UK Family Weekend. Unfortunately, we cannot share the whole presentation yet, as his work has not been published but here are some of the headlines. Meir discussed the reasons behind the cessation of independent walking and showed examples of therapy and the use of Applied Behavioural analysis (ABA) to enhance walking (this is a science that involves using modern behavioural learning theory to assess and treat behaviours; behaviour analysts assess the relationship between the targeted behaviour and the environment).

Airett Congress


He strongly recommended that walking was found to:• Prevent osteoporosis• Improve joints ranges of motion• Enhance muscle strength of lower limbs• Improve pulmonary function• Improve cardiovascular function• Improve social aspects as a person with walking ability is perceived as being less disabledMeir also reported on his research, comparing how Rett people prepare to take the first step compared with normal walking. Those with RTT have difficulty planning movement and have visual uncertainty. Normal walking has a posterior backward imbalance; those with Rett do not like rocking backwards. We need to be able to change the posture and hydrotherapy can help.

1. Challenging the 4 stages of Rett SyndromeOn the basis of his research, which shows that rehabilitation of older people with RTT is possible, Meir suggested that the progression of RTT should not be considered to be in 4 stages, as it was proposed in 1987:Pre-regression, Regression and Post regression. His research shows that with intensive rehabilitation, Rett people can recover this lost ability

2. Challenging how charitable funds are being directed to drug therapies for RTT at the expense of therapies and management, vital to health and wellbeing. Meir used the slogan adopted in the early years by Dr. Rett, 'Care Today, Cure Tomorrow', to illustrate how very little funding is currently going in to research for therapies (physio, music, speech and language and overall day-to-day management; the 'care' element of Rett syndrome, compared with the search for drug therapies). He pointed out that, even if a new drug was found today, it would not take away the secondary disabilities the Rett people have today, such as: • Contractures• Low physical fitness• Shortened muscles• Weak muscles• Osteoporosis• Loss of function• Severity of scoliosis– all of which could be addressed/alleviated by timely therapeutic intervention.To read more of his recent work please have a look at his paper, which is available on the website under 'Latest Research', ‘The Time is Now; The Need for Intensive Therapeutic Interventions’.


Dr. S Budden (Oregon Health & Science University, Oregon, USA) 1. Emotional and Behavioural ManagementDr. Budden reported that we need to look at the chemical, physical and medical needs of the Rett person to understand why they are performing a particular behaviour. It Is important to establish and record a baseline of behaviour to track deviations from this and to assist with recording/measuring improvements.It helps to hold the hands while attention is paid to an external activity. If splints are used, they should be introduced slowly and for short periods only (advise twice daily for 15 minutes each time).Using gentle massage of the mouth helps reduce excessive saliva production.The general 'take home message' was that one needs to look for all possible medical causes such as pain and/or discomfort from, e.g. reflux, orthopaedic, ear infections, dental, gastrointestinal, etc. before coming to the conclusion that the problems are caused by emotional and behavioural difficulties and treating them specifically, particularly when using medication. Pain can be expressed in insomnia or irritability.

2. Transition to from paediatric to adult services and lack of services for adultsPlanning for transition is crucial. Most countries lack services for older adults with RTT. Need to establish clinical 'passports' to make it easier to go from one service to another. Need also to look at the general problems of ageing with more specific Clinical guidelines, e.g. cardio-respiratory, nutrition, etc. Need a focus on rehabilitation for older Rett people.Rett UK is hoping over the next couple of years to do some focused work with older people who have Rett syndrome. We currently have a funding application with BUPA to support the mental and physical well-being of people with RTT from mid-life onwards. This will include a questionnaire to families and carers to gather some baseline information about health and quality of life before developing some guidelines with our key advisors and a training programme for support staff. We also have funding from Children In Need to support transition from children to adult services. Please contact the office for more information.

Dr. Angus Clarke summarising drug trials for RTTAngus outlined some of the challenges of drugs trials in RTT. Safety is the main priority although this may result in under-treating. Other groups of disorders have an established process for clinical trials, yet for rare diseases this is not the case. We should therefore be very grateful to the researchers for the work they are doing. Social media such as Facebook can be the best friend or worst enemy to clinical trials. Even if a drug is safe for general paediatric use it can be different for children with RTT. Responses to drugs well tolerated in other disorders have proved different in RTT. Also, in certain trials, it excluded patients with long QT. The trials also have to be able to monitor for anaphylactic response.You can read more about Angus work on page 20.


Book ReviewRett Syndrome: Therapeutic InterventionsEditors: Meir Lotan and Joav Merrick

This book is the collected experience of an extremely devoted group of therapists who have spent a major part of their professional lives working with individuals with Rett syndrome. Their practical work and clinical experience has unveiled ways to provide the best health related intervention and support in many diff erent areas. They believe that intensive adapted intervention could prevent some of the problems that can arise as a result of the disorder. The knowledge presented is designed to explain what was successful in health-related support. There is much information that is surprising and would help devoted professionals, parents and carers to provide the best care. Meir Lotan has compiled this book. He is Senior Lecturer in the Department of Physical Therapy at Ariel University in Israel. Mier says that, “I was completely taken by these amazing girls, since the time I fi rst met them in 1992” and “since then I have been fascinated and this book is the 'result of my journey'.” In 2000, he was given an award by IRSA (International Rett Syndrome Association) for his service to individuals with Rett syndrome. Anyone who has heard him speak at our Family Weekends will know that he is an experienced and knowledgeable practitioner.Professor Joav Merrick is in the Ministry of Social Aff airs and the National Institute of Child Health and Human Development in Jerusalem and at Kentucky Children's Hospital, University of Kentucky, Lexington, USA. There are eighteen chapters, each sharing the clinical experience of Meir and other therapists over a wide variety of topics; it is a comprehensive book. Examples of the areas covered are: guidelines for individual intervention, osteoporosis, clinical insights at meal-time, enhanced communication, music therapy, hydrotherapy, aging and communication. I think this is an excellent reference book with a detailed index. It is well presented with each chapter preceded by an abstract, giving a brief outline of the contents and a handy conclusion and list of the references at the end. This will be a great handbook for parents and professionals who deal with all ages and stages of RTT.

Available to order now on the website for £30 plus P & P.


Thank you to Peter and Yvonne Oliver Congratulations to Peter and Yvonne on recently celebrating their Golden Wedding Anniversary. They decided to request donations to Rett UK in lieu of presents and have so far raised in excess of £700 for us. Thanks so much to Yvonne and Peter, their family and friends for their generosity.Our gratitude is additionally owed to Peter and Yvonne for running the 200 Club which, since 1996, has been the 300 Club. Peter and Yvonne also attended the Family Weekend and organised the tombola. We are most indebted to Peter and Yvonne for all their support to Rett UK over the years.

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Thank you!

300 Club ResultsWell done to everyone whose numbers were pulled out of the velvet bag this time

July 20151st prize...£30...Rita Hyland

2nd prize...£20...Ronnie Jaff a3rd prize...£10...Joan Langdown

August 20151st Prize...£30...Steve Jackson

2nd Prize...£20...Valerie Jackson3rd Prize...£10...Rita Hyland

September 20151st Prize...£30...Colin Pheysey2nd Prize...£20...Yvonne Oliver

3rd Prize...£10...Graeme Forrester

If you’d like to join our 300 Club and receive the full benefi t of our 12 monthly draws, please contact our draw organiser, Yvonne Oliver, [email protected], who will send you all the details and a registration form.

Peter & Yvonne at the Family Weekend tombola stand

Front cover images: Top right– Lesle Coppen & Care Team; Left – Bethan, Peter and Lowri Foden; Bottom right – Terry, Paula and Charlie Woodward; Centre – Stacey Morse, Clare Bangher, Claire Sykes


Memories – Claire PattersonBy her mother, Marian Patterson

Our happy, smiling girlI would just like to share some memories of our daughter Claire's life, who sadly passed away in March 2014, aged 27 years.Claire was always a happy, smiling girl and melted the hearts of everyone that knew her.She would talk without been able to say a word as her eyes would say everything she needed to say. Her eyes would light up for the love of her favourite DVDs and CDs, such as Dirty Dancing and Grease.Claire always loved going to her day centre, where she was well loved and was looked after by all the staff.

I am so proud to have been Claire’s mam and I miss her so much it hurts but I know she will always be looking down on us all.Claire will never ever be forgotten.

What difference do we make?Rett UK receives no direct government funding and relies entirely on the generosity of our families, their friends and colleagues in order to help us continue to provide the much needed and valued Family Support service.We do also regularly receive funding from grants and trusts but increasingly they are asking us to tell them about the difference we make to the lives of people with Rett syndrome and their families. We would like your help to provide this information to funders in order to evidence the value and the impact of the professional support and information we provide to our families.Please email [email protected] if you have a story of support to share.

RETT UK, LANGHAM HOUSE WEST, MILL STREET, LUTON LU1 2NA • TELEPHONE: 01582 798910

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YES I want all donations I’ve made over the past 4 years and all future donations to be treated as Gift Aid until I notify you otherwise.To qualify for Gift Aid you must pay UK income tax or capital gains tax at least equal to the amount Rett UK will reclaim in the tax year. Please let us know if you change your name, address or tax status by calling 01582 798910.

The Direct Debit Guarantee THIS GUARANTEE SHOULD BE DETACHED AND RETAINED BY THE PAYEE• This Guarantee is off ered by all banks and building societies that accept instructions to pay Direct Debits• If there are any changes to the amount, date or frequency of your Direct Debit FCC Re Rett UK Ltd will notify you 10 working days in advance of your account being debited or as otherwise agreed. If you request FCC Re Rett UK Ltd to collect a payment, confi rmation of the amount and date will be given to you at the time of the request.• If an error is made in the payment of your Direct Debit, by FCC Re Rett UK Ltd or your bank or building society you are entitled to a full and immediate refund of the amount paid from your bank or building society. If you receive a refund you are not entitled to, you must pay it back when FCC Re Rett UK Ltd asks you to.• You can cancel a Direct Debit at any time by simply contacting your bank or building society. Written confi rmation may be required. Please also notify us.

Rett UK Ltd, Langham House West, Mill Street, Luton, Bedfordshire LU1 2NA. Reg. Charity No. 1137820

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