rett news · dobson (physiotherapy), stacey clough (oral/dental health), adrian kendrick...

Rett NewsSupport today, hope for tomorrow

www.rettuk.orgissue: two/2017reg. charity no: 1 137820company reg: 07339522

IN THIS ISSUE

Communication & Education Update

Newcastle & Kent Regional Events

5th European Rett Syndrome Congress

London Marathon Champions

RETT NEWS · ISSUE TWO/2017 · IFC HELP SUPPORT US TO HELP SUPPORT YOU

Rett News Contents

Rett UK, Victory House, Chobham Street, Luton, Bedfordshire LU1 3BSGeneral Enquiries: 01582 798 910 · Support Line: 01582 798 911Email: [email protected] / [email protected] · Website: www.rettuk.orgFacebook: Rett UK · Twitter: @RettUK · Just Giving: www.justgiving.com/rettsyndrome

HONORARY POSTS - Patrons: Ann Clwyd MP, Dame Evelyn Glennie, Gloria Hunniford, Jon SnowPRESIDENT - Yvonne Milne MBE · VICE-PRESIDENT - Lorna Jaff aTRUSTEES - Honorary Chairman: Hilary Truss · Honorary Vice-Chairman: Honorary Treasurer: Lucy Duncan · Tim Addison, Clive Beadle, Michael Britten, Philip Gander, Debbie Keyes, Celia Madden, Peter Oliver, Julie Owen, David Rogerson, Robert Valentine, Vicky WilliamsRETT UK STAFF - CEO: Becky Jenner · Family Support Manager: Julie BensonFamily Support Offi cer: Patrice Hosier · Offi ce Manager: Donna Tinch Fundraising Development Offi cer: Gemma Turner · Bookkeeper: Becca Prince.

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

The views expressed herein do not necessarily represent the views of the editor or of Rett UK’s offi cers, 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.

Rett syndrome RTT is a rare neurological disorder aff ecting mainly females and very few males. It is present from conception and usually remains undetected until major regression occurs at around one year of age, when children may lose acquired skills and become withdrawn. Genetic but largely not inherited, Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and communication disabilities and are totally reliant on others for support 24/7 throughout their lives.

Welcome from the CEO 1Support Round Up 2South GloucestershireSupport Group Meeting Invitation 4Insight into School Transport 5Bedroom Tax Exceptions 6Spotlight on Siblings 7BBC Children in Need Rickshaw Challenge 8Family Focus – Communication and Education Project Update 9Early Identifi cation of Rett Syndrome Using Behavioural Biomarkers 11Research – Update on Stars Study 125th European Rett Syndrome Congress 13

Fundraising Round Up London Marathon 14 Brighton Marathon 16 Manchester Marathon 18 Jade Wyatt Annual Golf Day 19 Kitson Music Night 20 Parachute Jump 21 Thank You 22Fundraising Virgin Sport London 10K 2017 28 The Big Half 2018 28 Easy Fundraising 29 Might You be a Rett Champion? 30 2017 Events 31Might you be a Regional Ambassador for Rett UK? 35300 Club Results 36Make a Donation Form 37Legacies BC

HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/2017 · PAGE 1

Welcome from the CEO

Hello and welcome to the Summer issue of Rett News. There is much that we hope you will fi nd interesting to share with you about our work and what else is happening in the Rett community.

On page 9, we have an update on the communication and education project. We now have several resources on our website, which include tip-sheets on matters such as establishing a best Yes/No, how to model language and partner assisted scanning. Included with this issue of Rett News, you will fi nd a handy grid which shows you all the options, including price guide and technical specifi cations to consider, which we think you will fi nd extremely helpful when buying eye-gaze equipment. Keep watching our Facebook page and the website as we add further resources and announce more events to support you on your communication learning process. The planning for our next Regional Event is well advanced. We shall be at The Hadrian School in Newcastle on 7th/8th July, 2017 to welcome families and professional people who want to learn more about various aspects of the disorder. We are delighted to have a full programme, with some great speakers including Ana Abdula (research), Mark Bailey (research), Adrian Kendrick (sleep and respiratory issues), Victoria Federico (Access2Legal – EHCPs), Callie Ward and Abigail Davison Hoult (communication). In addition, 1:1 sessions can be booked with our experienced specialists, namely Cindy Jo Morison (music therapy), Gilly Dobson (physiotherapy), Stacey Clough (oral/dental health), Adrian Kendrick (sleep/respiratory issues), Tobii Eye Gaze and communication support from Callie and Abigail.We have updates on drugs development and clinical trials plus an overview of a research paper that was shared at the Vienna 50:1 conference in 2016. In ‘Family Support’ we have a review of the Belfast Regional Event, information about how the ‘Bedroom Tax’ may aff ect you, a spotlight on support for siblings and much more.As always, there are many great moments and photographs from our fundraisers to share. Our fundraisers frequently exceed their own expectations, both physically and emotionally, to raise vital funds to support our work; we are indebted to them. Their stories are inspirational; we hope you are moved by them as much as we are. I hope you enjoy this issue of Rett News. Please let us know your views, as your feedback is extremely important. Thank you.

Becky Jenner

RETT NEWS · ISSUE TWO/2017 · PAGE 2 HELP SUPPORT US TO HELP SUPPORT YOU

Support Round UpBy Julie Benson

Regional Event - BelfastMarch 2017 saw the Rett UK Regional Event arrive in Belfast.

This event was warmly welcomed by all the families, both from Northern Ireland and the Republic of Ireland.

We worked closely with the Rett Syndrome Association of Ireland to organise this event.

Our host venue, Glenveagh School, was amazing! Caroline and her team were heroic, helping with the planning and organising of the event. They were on hand throughout the day to help with the care rooms and activities for siblings and to make sure that none of us got lost!

Once again, our team of dedicated professional advisors volunteered to provide information and one-to-one sessions to families, giving up the weekend to help others. We are truly grateful to the team members for their continued support and commitment to Rett UK Regional Events.

The day followed the now familiar pattern of presentations from our professionals advisors, Dr. Adrian Kendrick (breathing and sleep), research fellow Ana Abdula Ph.D., occupational therapist Elaine Doherty, combining with opportunities for one-to-one sessions with physiotherapist Gilly Martin and Abigail and Callie, working with Tobii Dynavox to provide access to eye-gaze, communication and education. We welcomed for the first time at this event Emma Donnelly, a music therapist and Sally-Ann Garret, a speech and language therapist and true champion and long-time supporter of Rett UK events.

While all this was going on for the families, people with Rett syndrome and their siblings were entertained by Party Animals, an impressive petting zoo, at which everyone had the opportunity to meet creepy-crawlies and other exotic animals and Pat’s Parties, which charmed everyone with its wonderful face-painting and balloon-modelling. Finally, for those of a more mature age, there was the opportunity to enter the ‘chill-out’ zone for hand and feet massages and nail-painting.

The grand finale was a wonderful closing activity orchestrated by Emma Donnelly, which brought everyone together at the end of the day to share some fun and laughter with a musical activity, greatly enjoyed by one and all, from the very young to the more mature.

Thank you, Northern Ireland. In the now famous movie words – we’ll be back!


CorrectionIn the previous issue of Rett News (page 15), we mistakenly stated that this research was being funded by Reverse Rett. We wish to apologise unreservedly to Anne Breaks and confirm that her Ph.D was not funded by nor connected to Reverse Rett (which did indeed publicise it). Anne’s Ph.D is independent and does not receive funding from any organisation.

Rett UK Regional EventNEWCASTLE

Saturday 8th July 2017, 9.00am-4.30pm Hadrian School, Bertram Crescent, Newcastle, NE15 6PY

Booking through Eventbrite bit.ly/2rzG1OAIf you do not have access to this facility, please request a booking pack by

contacting [email protected] or telephone 01582 798 911.Places are limited so please book early to avoid disappointment.

A completed booking pack is essential to secure your place.

Friday 7th July, 1.30pm-4.30pm Hadrian School, Bertram Crescent, Newcastle, NE15 6PY

Free Event for professional practitioners, including Rett Syndrome Awareness and Communication and Education.

Please share this information with professionals and therapists who support you and your daughter/son. This is an important opportunity for them to gain a

better understanding of Rett syndrome and how it impacts on families.

Save the DatesRett UK Regional Family Roadshow 2017

KENTFriday 13th October – Professional Awareness Workshops

Saturday 14th October – Family and Professional Event

Professional Rett Syndrome Awareness EventsPlease share this information with professionals and therapists who support

you and your daughter/son. This is a great opportunity for them to gain a better understanding of Rett syndrome and how it impacts on families.


Wendy and Michael Britten would like to invite you and your children to the Rett Syndrome Support Group meeting at our home.Some families have been here before and know that it provides an opportunity to relax, talk with others over your experiences, share your concerns, give and receive advice and make new contacts and friends. If you haven’t been to a get-together before or in a long time, it would be good to come along, catch up and exchange ideas. Support groups provide a valuable opportunity for families to meet with others who understand what it is like caring for someone with Rett syndrome; the more who join us the better the group will function. We live in a lovely, quiet part of South Gloucestershire, in the village of Rockhampton. We have a large, child-friendly garden with play-equipment, where your children can

enjoy themselves. There are ceiling hoists and changing tables. There is off -road parking in our driveway. During the afternoon, we shall provide buff et food and refreshments for you and your children. We also have a large, heated, hydrotherapy pool (kept at 34°C). If you and your child would like to use it, please bring towels and swimming costumes for the adult carer(s) and a swimming costume for your child with protector pants if needed.If you have satellite navigation, the postcode brings you to the end of our driveway, close to the clubhouse of the village cricket pitch. From there, our single-width tarmac drive goes across the end of the pitch and into the trees, to our house at the far end. If you need further directions, please telephone. If you do not have satellite navigation, please telephone and let us know that you would like to come and we can provide written directions.To have an idea of numbers, if you are planning to come, we would appreciate it if you would please let us know as soon as possible: Tel: 01454 261221 Email: [email protected] look forward very much to welcoming you here! Wendy, Michael and Sarah Britten

Rett Syndrome Support Group Meeting

Sunday 25th June, 2pm-5pmThe Old Rectory, Rockhampton, (Berkeley), South Gloucestershire GL13 9DT

INVITATION


School transport arrangements are often confusing for parents, as local authorities have their own rules and entitlements. A concise guide to your entitlements may be helpful.Children with special education needs (SEN) or disability are entitled to free school transport. The law provides that local authorities must make available transport to pupils who are unable to walk to school because of their SEN, disability or mobility issues. It does not matter how short is the distance or if the pupil has a statement or not of EHC (Education, Health and Care) plan. Some children with SEN may be able to walk to school.The local authority may provide various kinds of transport; these may include a dedicated taxi or minibus service with or without an escort, care mileage allowance, bus passes or travel cards.The local authority must assess the individual needs of the child or young person. At the time of the application for transport, parents should provide the authority with clear information about their daughter’s or son’s condition and any health needs. The local authority will examine the application and decide if there are any special arrangements required; among them might be an escort or equipment, such as specialised seating. To be suitable, transport must be safe and ‘non-stressful’. This means that your daughter or son should arrive at school ready to learn.All local authorities must publish annually their ‘Home-to-school transport policy’; these may vary in character across the authorities. You will probably find it on your authority’s website but if not, telephone and ask for a copy to be sent.For 16-18 year-olds, the local authority should have a policy which sets out how they will support young people to get to school or college. The policy must state what help is available for students with SEN and disabilities. Local authorities are not required to provide free help to this age group and may ask families to contribute to the costs of the transport, particularly if they are in receipt of Personal Independence Payments (PIP) or Disability Living Allowance (DLA) Mobility Components at the higher or enhanced rates.If you disagree with the decision made by the transport department, you may be able to appeal against it. Check your local authority website for the transport policy and appeals’ process. This should set out how decisions are made and the appeal procedure and deadlines. In challenging a decision, it is important to include supporting evidence of your child’s or young person’s needs for transport.Your occupational therapist or physiotherapist may be able to provide supporting evidence, as may your GP or paediatrician.

Insight into School Transport


Bedroom Tax Exceptions

The Housing Benefit Size Criteria Rules, or ‘Bedroom Tax’ is applied to people who are of working age, who live in social housing and who receive financial assistance towards their rent through Housing Benefit. They may have the amount they receive restricted if they are considered to have too many bedrooms.‘Working age people’ are those who are under the state pension age. If you are a couple and one of you is at or above the state pension age, you won’t be affected by the ‘Bedroom Tax’. ‘Social Housing’ includes properties rented from a council or housing association. However, you will not be affected by the ‘Bedroom Tax’ if your home is temporary accommodation. If you live in a privately rented property and receive help towards your rent through Housing Benefit or Universal Credit, you will be subject to similar rules.

The provisions meant that many carers were being charged for a spare room that they need either for siblings who are unable to share because of the effects of disturbed sleep or for storing equipment. Carers UK has been campaigning to have the provisions repealed.A successful recent Upper-Tier Tribunal appeal paves the way to allow the use of an additional bedroom for disabled children or non-dependent adults. Previously people in this situation would have been liable to pay the ‘Bedroom Tax’.The decision comes after Carers UK members Paul and Susan Rutherford and Jacqueline and Jayson Carmichael challenged the policy through the courts.For more information about the decision and how the current legislation may affect you, please look at the Carers UK website: www.carersuk.org/help-and-advice/financial-support/help-with-benefits/bedroom-tax or call the Adviceline on 0808 808 7777 (Monday to Friday, 10am-4pm).


Spotlight on Siblings

Sometimes it may seem easier to delay telling siblings about their sister’s or brother’s disability or condition because you believe that they might not understand or the information may be too upsetting. However, siblings may otherwise have a sense of exclusion and knowing what is happening can help them cope more effectively.Telling siblings promptly about their sister’s or brother’s condition may help them to understand that the latter may receive more attention from their parents because they need it more and not because the parent has greater love for the child with disabilities. Conversely, choosing to delay telling siblings about their sister’s or brother’s disability or condition may be worse than telling them at an earlier stage. They may hear the comments of others or read opinions on the Internet which may not be correct; they may make up their own versions of what is happening, which may be worse than reality. It helps if you can tell your sibling child at or around the time of diagnosis. Do this when you have undisturbed privacy and time. We know that it is a difficult period for families but this is an ideal one during which to answer questions. Don’t go into too much detail. Be honest and factual with siblings. Encourage them to ask questions.Suggestions: • Spend individual time each day with siblings; this may be difficult occasionally but it is important to them. Just fifteen minutes a day can be worthwhile• Talk generally and specifically about disability and additional needs • Recognise that siblings may also have both negative and positive feelings and on occasions may resent their sister or brother• Encourage siblings to have fun, however brief times with their sister or brother. Having fun and building memories is all part of sibling bonding• Make sure that siblings receive help and guidance with issues such as disturbed sleep, being injured or not being able to do homework• Siblings may like time spent away from their sister or brother to follow the pursuits which they enjoyIf you have concerns about your sibling children, please contact us at Rett UK and we may be able to offer ideas. We have undertaken training on how to care for siblings through fun activities. We would like to continue to improve support for siblings, be they children or adults and in the future we shall be engaging in further training in this area.We shall be offering sibling workshops at our Regional Events and we hope that, in a safe environment, this will give children and young people the opportunity to talk with other siblings about their emotions and experiences. A good resource is the website developed by Sibs: www.sibs.org.uk


BBC Children in Need Rickshaw Challenge 2017

It’s that time of year again! BBC Children in Need is looking for volunteers to take part in its Rickshaw Challenge 2017.It hopes to recruit siblings, aged between 16 and 20 years old, who would be available from the 9th to 17th of November, when the challenge takes place.There are a couple of rounds in the selection process, starting with your submission of expression of interest. Children in Need will then respond with a telephone call; then there is likely to be a round of interviews, with the fi nal selection process taking place over three days in September in London.Are you interested? Do you think that you can rise to the challenge? Would you like to do something further to raise awareness of Rett syndrome?Contact [email protected] or telephone 01582 798 911.

BBC Children in Need Rickshaw Challenge 2016


Family Focus – Communication and Education Project Update

Rett UK is pleased to share more details of the new project, which will provide for families, care-givers and professional practitioners, the infrastructure and training needed to develop an effective and robust communication system for the people with Rett syndrome whom they support. There is no doubt that people with Rett syndrome can communicate and they should be given every opportunity to do so. We aim to help them to maximise their communication potential.

Our intended outcomes are to improve:• The success rate of people receiving funding for eye-gaze equipment via the NHS and other charitable sources (taking the burden from families to fundraise for it)• The knowledge, support and training of communication strategies for people with Rett syndrome (not just within families but to aid practitioners, particularly speech and language therapists and teachers) • The ability of people with Rett syndrome to communicate Resources can be found at www.rettuk.org/resources/communication They include ‘Establishing Yes/No’, ‘Modelling’, ‘Partner Assisted Scanning’ and ‘Making Choices’. We organised a pilot programme comprising small communication workshops in the Bedfordshire area; we are evaluating them and considering replicating them in other areas. Then, in the middle of May, we organised the first ‘Getting Started with Communication’ event in Scotland.

Here Callie Ward reviews the event:“We enjoyed meeting families in Larbert, seeing people at many stages in their communication programmes; we all learned much that was new from each other. We discussed the low-tech (paper based), high-tech (devices) and no-tech (no resources, just speaking) ways of communicating and how we might use different methods in different situations. It was valuable to offer everyone a range of resources in order to get started right away. It was revealing to have such a spread of ages, from parents of a 3-year-old to the sibling of a 45-year-old. We were reminded that Augmentative and Alternative Communication can be commenced at any time. Our thanks are owed to James and Leanne Flynn for organising the event, to Emily for speaking and to Debbie, Alyssa and Jude for coming along to help.”


Here is some of the feedback from families: “What a fantastic day! Rett communication training workshops, sharing learning and ideas with old friends and new. Thanks Callie and Emily – you are both fantastic at what you do. You made it all new and exciting again!” Leanne Flynn“Here now for day 2.... Lucie with her family, carers and professionals communicating as an equal! Fantastic provision. Thanks Rett UK x.” “It gives other families hope that these communication aides do work with each individual person to communicate their needs.” Sarah Hanson“Thank you Rett UK for putting this day on and thank you Callie, Emily and Debbie for having us there. It was a great two days, very interesting and loved the pack that we were given to take home with us!”“Great event Callie. Gunter and Romi’s teachers really enjoyed the session. Romi was pretty pleased with herself.” Gael Gordon“Alyssa LOVED it as always, she can’t wait for the next one!” Susan Hay

There is much more to come... We shall:• Shortly have three sets of eye-gaze equipment to loan to families to help them build cases for support when trying to access NHS funding• Recruit a project lead • Provide more written and online resources including short videos and webinars• Provide support and training as part of the local support groups and through presentations and 1:1 clinics at our Regional Events• Provide dedicated communication workshops and events for families and professional practitioners• Engage with others to facilitate research which helps establish an appropriate assessment tool to show cognitive ability in Rett syndromeRett UK has committed £77,700 for this work in 2017/18 but this is a continuing project which will become part of the core offer of support provided by Rett UK. We are grateful to all those who have helped make this possible from various events. These include Cycle4Rett, HSBC match-funding via Philip Baker, Michelle and James Prendergast, London Marathon Champions – Louise and Marcus Stewart, Chloe Austin, James Sharman, Angela Duncan and Jonathan Turner, the Elton Furze Golf Club, John and Lucy Wyatt Golf Day in memory of Jade, the Beedles Lake Golf Club, Brighton Marathon Champions – Sharon Slade and Patrick Carpenter, in addition to some legacy funding. Together, every day we are helping people affected by Rett syndrome.Thank you all for your support. We look forward to bringing you regular updates about the project.

Early Identification of Rett Syndrome Using Behavioural Biomarkers By Becky Jenner


When we talk about Rett syndrome, we normally describe a period of fairly typical development followed by a regression. I recall that when I had Rosie, who was my first child, in the first year I did not suspect that anything was wrong, particularly as I had no means of comparison. With hindsight, having had two unaffected boys, I can see now just how far off ‘typical development’ she was, in fact. Without doubt, she had severe reflux from day one, had low muscle tone, was not weight-bearing when she should have been and had a high pain threshold. The MECP2 genetic test and better awareness of the disorder have led to earlier diagnosis with the average now being around the age of two but there is interesting research being done by Christa Einspieler and Peter Marschik, examining the very early movements and communication signals seen in neurotypical babies, compared with babies who were later diagnosed with Rett syndrome. Family video recordings, including some in utero scan video recordings of babies later diagnosed with Rett syndrome, have made this possible. In their abstract included in Springer Medizin, Issue 11-12, 2016, entitled Behaviour biomarkers of typical Rett syndrome moving towards early identification, they reported that abnormal movements in the first six months of life were seen in all 22 individuals who were later diagnosed with Rett syndrome. As well as the abnormal postural movements, they saw significant differences in tongue protrusion, asymmetric opening of an eyelid after a blink, early stereotypies and unusual smiling. In the same publication, they referred to research which they had done looking at very early socio-communicative abilities of babies and toddlers with Rett syndrome compared to a neuro-typical group. Their findings were in line with earlier studies which showed that there were pre-regression speech-language deficits and communicative deficits in individuals with typical Rett syndrome. Christa says that their work has the potential to lead ‘to a promising way of defining a set of behavioural parameters pinpointing Rett syndrome’.

Olivia Phoebe


Research

Update on Sarizotan STARS TrialIn the last issue of Rett News we shared news of the clinical trial for the drug Sarizotan which has been developed to help with some of the breathing difficulties experienced in people with Rett syndrome. The trials in the UK at the moment are for patients over the age of 13 years but it was announced on 17th May 2017 that Newron would be expanding the trial to include patients between the ages of 6 and 13 years in America. They are also asking the Health Authorities and Institutional Review Boards of the other countries involved if they will also agree to expand the trial.

Newron Pharmaceuticals Announces Expansion of STARS Study to Include Patients Under 13 Years of Age“Ravi Anand, M.D., Chief Medical Officer at Newron, commented: “Rett syndrome is a devastating condition that manifests in early childhood. This decision by the FDA to lower the age limit for inclusion of patients from six years old will allow Sarizotan’s benefits to be evaluated in these younger patients before the disease has significantly progressed. Newron believes that earlier onset of treatment in Rett patients may be associated with less deterioration of respiratory and neurological symptoms.”STARS is a randomized, double blind, placebo-controlled study, expected to enroll 129 patients (three groups of 43), in up to 15 centres of excellence in the USA, the UK, Italy, Australia and India. The potentially pivotal clinical study will evaluate the efficacy, safety and tolerability of Sarizotan in patients with Rett syndrome suffering from respiratory symptoms. Among the core symptoms of Rett, breathing disturbances may affect the whole body; they can have a marked effect on biochemistry, influence emotions, circulation and digestive function as well as musculoskeletal structures in the respiratory process.The primary endpoint for the STARS study is reduction in episodes of clinically significant apneas (>10 sec) during waking time by 20 percent. During this 6-month study, patients will receive treatment with daily doses of 10 and 20 mg of Sarizotan, or placebo. The Company expects to have top-line results available for release in 2018.Sarizotan received Orphan Drug Designation for the treatment of Rett syndrome from both the European Commission and the FDA in 2015. It could become the first therapy approved for the treatment of Rett syndrome patients. Newron intends to commercialize Sarizotan directly.Besides the STARS efficacy study, Newron, as part of its commitment to the rare disease patient community, is partnering with the global Rett community to work on the first Burden of Disease (BOD) study. The study aims to deliver data and analytics to quantify the physical, emotional and financial challenges of Rett syndrome.


These learnings can help identify improved intervention programs and services designed to complement the Rett care pathway.”Sourced from the original article: MILAN & MORRISTOWN, N.J.--(BUSINESS WIRE) --Newron Pharmaceuticals S.p.A. (“Newron”) (SIX: NWRN)If you are want to express an interest for the clinical trial please contact [email protected].

Berlin, 2nd – 4th November 2017The theme of this exciting event is ‘To connect people – to share knowledge’. It will be of interest to parents, care-givers, physicians, scientists and therapists.Having been fortunate to attend all the European conferences so far, I can highly recommend putting this one on your calendar. Why? You will hear the very latest news and reports of their work from Rett syndrome experts, along with an important opening address by Dr Alan Percy from the USA, who has been involved in Rett syndrome from the time it became recognised world-wide. You will also have the chance to talk to the experts, ask questions and meet other families from around Europe. This is something not to be missed.Of course, you will see Berlin. As well as the impressive sights, museums and entertainment venues, you may be able to explore the city area which is composed of forests, parks, gardens, rivers, canals and lakes. The conference programme will cover topics such as Epilepsy, Scoliosis, MeCP2 Function, Future Research, Communication (AAC) and more.For the full programme, please visit www.rett2017.berlin. There will be a chance to receive an ‘Early Bird’ discount, so make plans right now to go.Looking forward to seeing you there.

5th European Rett Syndrome CongressBy Yvonne Milne, President Rett UK


We had five wonderful people running for Rett UK this year. Our heartfelt thanks go to each of them and their families, friends and colleagues for their amazing support. Read here about Chloe Austin, Angela Duncan, James Sharman and Marcus and Louise Stewart, who together raised an incredible £18,245.53 + £3,357.12 Gift Aid for Rett UK and much-valued awareness of Rett syndrome. Read here what they say about their marathon experiences.

Chloe AustinI ran the 2017 London Marathon on behalf of Rett UK, to help support the enormous work that they carry out for families of Rett sufferers, such as my cousin Clare. Although there were tough times in the lead-up to the marathon (notably long runs in unpleasant weather and several busy weeks organising fundraising events in London, Chelmsford and Guildford) everything seemed worthwhile when I exceeded my fundraising target a few weeks prior to the race and when I finally crossed the finish line on Sunday, April 23rd. The race got off to a good start before I began a migraine headache at around mile-10. However, the support from friends, family and the Rett team at frequent intervals along the route encouraged me to keep going and complete the race in 4.11.52.I owe a great debt of thanks to everyone who helped me reach my fundraising target, especially mum, dad and Dan as well as to Auntie Karen, Zoe, Nat and Dan for making the Guildford quiz night a huge success. I have raised £3,346.18 + £407.56 Gift Aid to date, which I am thrilled

Fundraising Round Up

Chloe and her dad

LONDON MARATHONWe celebrate the remarkable efforts of this year’s London Marathon Rett UK Champions – well done!


about. Thanks are also due to everyone who turned up on the day to support me (notably those who were unfortunate enough to witness the blisters at the finish line). And finally, my thanks go to Donna and the team at Rett, who have been most generous throughout in providing support and advice as the race dawned ever closer.

Angela Duncan Congratulations to Angela, who completed the marathon yet again this year for Rett UK. Angela told us that she has no intention of her hanging up her running shoes just yet! She raised £270.00 + £30.00 Gift Aid in honour of her grandaughter, Emma. Angela told us that having her photograph taken was worse than running the marathon!

James SharmanLast October I received my ‘You’re In marathon magazine. I had decided that I wanted to do something for my niece, Cerys, who has Rett syndrome, so I chose to run for Rett UK. Although training was difficult, I have had a rewarding experience and as well as raising funds for Rett UK, I believe that along the way I have helped raise awareness of Rett syndrome by talking to friends, family and colleagues about Rett syndrome and the daily struggles which Rett families face.Marathon day was amazing and I was bursting with pride to run for Cerys and Rett UK. I was delighted to see Donna and Gemma cheering near the end of the race and to have my family spurring me on when energy was low at mile-23 was just what I needed. I exceeded my target and raised £1,934.98 + £436.81 Gift Aid. To top the day off I managed to take 12 minutes off my previous marathon time. All in all, it was a great day.

Louise and Marcus Stewart The Marathon day was, on many levels, a most emotional and humbling one.Preparation was tough, involving long, lonely and cold training runs, as we pushed ourselves beyond rational limits. Marcus’ training went well and he stayed clear of injury. I, on the other hand, had enough injury for us both. The most frustrating one was a slightly pulled hamstring on the Thursday before Marathon day. This meant that I had to run the marathon at a slower pace than that for which

James Sharman and, bottom, with his niece Cerys

Angela Duncan

RETT NEWS · ISSUE ONE/2017 · PAGE 16 HELP SUPPORT US TO HELP SUPPORT YOU

BRIGHTON MARATHONCongratulations and thank you to our Brighton Marathon runners, Patrick Carpenter and Sharon Slade.

Patrick taking part in the Brighton marathon in honour of his sister Louisa

FANCY TAKING PART NEXT YEAR?Virgin London Marathon 2018

If you are interested in next year’s marathon, please contact [email protected] to register your interest.

Marcus and Louise Stewart and friend Luke

Patrick CarpenterThe atmosphere was electric that morning, from the moment that we arrived in Brighton. At the starting line, everyone was friendly and raring to go. Once we started, I battled with myself to hold back because everything I had read indicated that the real marathon starts at 20 miles. My family members were at the two-mile marker and cheered me on, settling me down and making me smile. As the race proceeded, the temperature soared, so I took advantage of the water-stops and some very kind hearted people around the 14 mile mark, who gave me a slice of orange; it tasted delicious. Everywhere, the course seemed to be awash with music, jelly-babies and cheering crowds. Near mile-eighteen, I needed another boost and I received it from a lovely person thrusting jelly-babies at me, which was greatly

I had been training but managed to complete the whole run and loved every minute of it. I always had at the back of my mind the money that we were raising and the short-term pain which would eventually become a distant memory. We have both enjoyed the experience that we have had with Rett UK. We are astounded by the amount of support which we have had and significantly exceeding our fundraising target of £6,000, by raising a phenomenal £8,223.00 + £1,670.25 Gift Aid. We also gained great satisfaction by increasing awareness of Rett syndrome. We are indebted to all our wonderful supporters who helped us raise such an impressive amount, with special thanks to the anonymous donor who donated £3,267.60 plus £816.90 Gift Aid.


appreciated; I was surprised at the boost it provided. By mile 23, all my focus on time was set aside and fi nishing was my only goal. Having passed several people on the ground, being assisted by St John Ambulance volunteers, I appreciated that simply fi nishing is a great achievement. The last two miles would have been twice as gruelling had it not been for the crowd and other runners motivating me to fi nish. You must dig deep to fi nish a marathon. However, in my case, the right training and the knowledge that I was running on behalf of a charity that has helped not only my family but countless others to make their lives a little easier, propelled me to the end. I exceeded my fundraising target and raised £1,410 + £352.50 Gift Aid.

Sharon SladeSharon has run many marathons, raising over £8,000 for the charity, in honour of her daughter, Lauren. Sharon reported, “Brighton was my fourth marathon and I was proud, as always, to be running for Rett UK. Brighton on a hot sunny day and a personal best were the icing on the cake!” Sharon raised £1,493.92 + £270 Gift Aid. Thank you so much Sharon for your continued support, we think you’re brilliant!


Sharon raised £1,493.92 + £270 Gift Aid. Thank you so much Sharon for your continued support, we think you’re brilliant!

Patrick with, from left, son William, daughter Seren and niece Imogen

Sharon and son, Joseph

Lauren Slade with mums medal Sharon’s personal best!


MANCHESTER MARATHONCongratulations and thank you to our Manchester Marathon runner, Mike Howie, who raised £881.00 + £122.50 Gift Aid.

Mike Howie

Katie Howie

Mike HowieI decided to run the Manchester Marathon to raise funds for Rett UK. My sister Katie was diagnosed at 4 years-of-age and this year she celebrated her 30th birthday. To mark the milestone event, my parents organised a huge party for her, inviting all her past carers, teachers, nurses and our family. Instead of gifts, my parents requested donations for the day-care and respite centres which support Katie in enjoying the life she leads. It seemed fi tting, since I am a keen marathon runner, to enter the Manchester Marathon, which was taking place on the weekend of her birthday, for Rett UK.I exceeded my initial fundraising target of £300 and generated over £1,000 in total. A collection also took place at the party, to boost my fundraising.Determined to complete the course, despite a knee injury from a race a few weeks previously, it was a brilliant day and a privilege to run for Rett UK.

GOOD LUCK!Good luck and sincere thanks to our

fundraising supporters for events coming up over the summer.


Jade Wyatt at Lucy and John’s wedding Bobby Arthy and John Wyatt

JOHN & LUCY WYATT ANNUAL

GOLF DAYin memory of Jade

SAVE THE DATE!Jade’s day will be held on Friday 22nd September 2017 at Bentleys Golf Club, Ongar Road, Brentwood, Essex CM15 9SS. It will commence at 10.00am for breakfast andfi rst tee-off will be at 12.00. It’s normally £50.00, including bacon rolls and dinner/presentation.

To register your interest please contact [email protected] or call 01582 798 910.

Bobby Arthy and John Wyatt

FRIDAY22SEPTEMBER2017


Music night

On Saturday, 12th November 2016, Brian and Amy Kitson hosted an amazing fundraising event in honour of their daughter.The evening was a musical feast, held for the benefi t of Rett UK and supported by bands Whatever’s Red and The Dolmen. With face-painting and bowls of chilli (and the bar, of course) it made for a fun evening. The event, organised by Steven Bedford and sponsored by Conical and Microsoft, was hosted by the Old Albanian Rugby Club in St. Albans. Parents of Emily, Brian and Amy had played and worked at the club in times past, making the event a reunion for many people and well supported by all. Conical paid for the event and Microsoft matched the funding received on the night, which amounted to a staggering £4,075.25 (£3,653.00 + £422.25 Gift Aid). Everyone danced the night away and helped raise awareness for Rett syndrome.Enormous thanks to Brian, Amy and their family and friends for their continued, generous support.


PARACHUTE JUMPStuart King bravely undertook a parachute jump in memory of his niece, Brittany, who remains adored and raised a total of £1,110. Stuart told us: “I knew from the beginning that Rett UK was going to be the registered charity for which I would jump. There were two reasons: the fi rst is one which is close to my heart, namely jumping in memory of my niece Brittany, who passed away seven years ago in consequence of the syndrome. Rett syndrome is not widely known and is rare but devastating to families who have children with it. The second reason was to help families, increase recognition and promote Rett UK and the relentless family support work that it does and to contribute towards funding for research, medical treatments, existing therapies and respite care.Finally, I would like to thank Brittany’s parents, Sharon and Lee, for promoting my jump for Rett UK and all my colleagues, friends and family for donating funds and raising awareness.”

Top: Stuart prepares for his jump and right, Brittany


Fundraising Round Up by Donna Tinch

THANK YOUA really big thank you to all of our incredible fundraisers.On 26th April, Becky Jenner and Michelle Prendergast were delighted to be invited to the London Head Office of HSBC, in Pall Mall, to collect a cheque for £12,708. This enormous amount was the result of a 10k sponsored walk through London on 1st December by enthusiastic HSBC employees, who heard about Rett syndrome from their colleague, Philip Baker, whose niece, Cerys Prendergast, has Rett syndrome. We are most grateful to HSBC, which matched their sponsorship, pound for pound. The money raised enables Rett UK to deliver practical workshops and develop resources for our families. This, in turn, helps people with Rett syndrome being supported to achieve their communication potential to the maximum. Huge thanks are due to the Prendergast family, Phil Baker, Sonya Bloxham and colleagues for all their support and to HSBC for its match-funding. Sonya Bloxham told us: “We, at HSBC London Region MME Commercial Banking, formed a committee last year, with a view to raising funds for a smaller charity, ideally connected to one of our employees, in the hope of making a significant improvement to lives in a more personal way. We discovered that one of our relationship directors, Phil Baker, from South London, has a young family member named Cerys, who suffers with Rett syndrome and that his family raises funds to help Rett UK, which directly supports Cerys and her family. HSBC organised a charity walk, which took place on 1st December 2016 and 104 staff members walked 10 miles from various starting points to Pall Mall, in London. The total amount raised was £12,708 and everyone found it rewarding and great fun to come together for a good cause. A cheque was formally presented to Rett UK with best wishes on 26th April 2017.”

From left: Philip Baker Sonya Bloxham, Tom Wood, Becky Jenner and Michelle Pendergast


Beadles Lake Golf Club. Back row: Barbara Sanderson, Rob Rich Bowles; Front row: Graham Abell, Bethan & Peter Foden, Tina, David & Heidi Wilkinson, Lynda Dunne and Paul Bumpus.

We are extremely grateful to Beadles Lake Golf Club for its generous support in raising £5,391.64. Following a nomination, Rett UK was the club’s Charity of the Year, in honour of Club captain Graham Abell’s grandaughter, Heidi Wilkinson. A full year of fundraising had been undertaken. Paul Lomas was the main organiser but Ladies’ captain, Lynda Dunne and Graham actively participated in the project. The funds raised will be spent on a mobile hoist for use at our regional and communication events, with the balance going towards the Communication Project. We would especially like to thank regional ambassador, Bethan Foden and her husband Peter, who attended the presentation. Bethan was delighted to accept the cheque on behalf of Rett UK, offer thanks and remind the audience of the important benefits that the funding will bring.Ashley McCormick completed the Liverpool Marathon in memory of his friend Rosie and in honour of his friend Keely Smith, raising £495.01 + £98.13 Gift Aid. Keely’s mum Sharon told us: “Ash was supposed to run the Manchester Marathon but had to pull out due to injury. He didn’t stop there but trained even harder to overcome his injury and completed the Liverpool Marathon instead. Crossing the finishing line, Ash insisted on handing his medal to Keely!”Ashley and Keely


Alan Maynard undertook the Brentwood Half-Marathon on 19th March in honour of his best friend’s daughter and raised £705.00 + £120.00 Gift Aid. Alan tells us: “I am no stranger to running, as this was my third time doing this half-marathon. However, this was my first attempt at raising money for a good cause and I decided to choose Rett UK. The reason was that my best friend’s daughter, who is now aged 7, was diagnosed with Rett syndrome 5 years ago. I’d not heard of Rett syndrome before that, so this was a good opportunity not only to raise money but also awareness. I managed to exceed my fundraising target with over £700 for Rett UK. The Brentwood Half-Marathon was even more of a challenge this year due to strong winds but I managed to cross the line in 1:51:43. I will continue to make others aware of Rett syndrome and hope that the money will allow Rett UK to continue to help families who need it.”Louise, Mick and James Hudson raised £400 at a coffee and cake afternoon which they held in memory of their dear daughter and sister, Amy. Louise explained: “On the 6th May of this year we held a coffee and cake afternoon in memory of our beautiful daughter Amy, who gained her wings at the age of 23 on the 11th of November 2014. The event was attended by friends and family and was a joyous afternoon. We held it two days before Amy’s birthday on 8th May. I had read in a bereavement book about reclaiming a day and bringing a positive aspect to a time when there is sadness, though it’s hard to have your child’s birthday when she is no longer here. Our positive reclaiming moment was to invite folk over and to raise a little money for Rett UK as a bonus.In the early days of Amy diagnosis, the Rett Association was a great comfort and support and its slogan ‘to know her is to love her’ was very true for us. We knew all her looks, the raised eyebrows and the half smile when she knew that she had her dad wrapped round her little finger and we loved her with all our hearts. We had a memorable 23 years of adventure with Amy; we had tears but lots of laughter and fun too. Thank you to everyone who came, for sharing such a special afternoon.”Amy Hudson

Alan Maynard

Sarah Hanson held an event in Livingston and raised £625 for Rett UK in honour of her daughter Miss Vikki. Sarah reported: “What an enjoyable time was had at my fundraising

charity/race night for two charities, namely Rett UK and Reverse Rett. I would

like to thank: the Almondvale suite staff at the Livingston FC stadium for preparing the venue; DJ Shuggie at Road Runners and his helper for encouraging us through the entire event; my three superb helpers, Angela Taylor, Sharon Monaghan and Debbie Curley; Celine Isdale, Allan and Jade for collecting tickets and entry fees; David Rogerson, a Rett UK trustee who delivered the welcoming speech and explained what Rett UK and Reverse Rett do for those living with Rett syndrome; Carol Robbie and her husband Mark for their participation; Rosemary Williamson and her friend, who work for First Steps Playgroup (part of the Beatlie School) and the teachers who attended; Fiona Moore and girls Tracy Hadlow and Arianna; Anna and David Mackay Lovelock for attending and donating a most generous prize to the auction; Marissa for selling raffle tickets, to family and friends and staff of Barnardo’s, including Connie. Lastly, I must thank my family members, Jacqueline Hanson, Thomas Hanson, my aunt Isobell Kerr, my uncle Colin, uncles John and David Apsley together with Julie Corbett and Louise Curley. To all who were unable to attend, Sarah and Miss Vikki very much appreciate donations that were made and will not forget donors’ generosity. We raised a total of £1,251 and are exceptionally happy with that.David Rogerson told us: “It was a really good evening, with over 60 people present, lots of auction and raffle prizes and a great deal of fun gambling on pre-recorded horse-races (with 50% of all money going to the charities). I was so impressed with the amount of effort that had gone into the night and the amount of money raised for Rett UK and Reverse Rett”.


I hear you, I see you I’m everywhere you goI speak a thousand words most people will never knowMy eyes tell the story but my voice will never growI live in this body, that will not let me showThe abilities I once had never disappearThey are deep down inside, fighting back with no fearMy strength and my weakness I have it allMy family they fight to prove to them allWhen the cure is found those thousand wordsWill come to the surface, and rise high aboveYou will hear me and see me you will listen to my wordsYou will cherish those eyes that spoke a thousand words.By Debbie Curley (Aunty to Sarah)

Sarah Hanson and inset, Miss Vikki


Charlotte and Jake Egelnick (mother and brother of Isobel) completed the Gung-Ho, 5km Obstacle Race in Brockwell Park and raised £375.00 + £75.00 Gift Aid.Princes Risborough Tangent donation of £500, which was raised at the Princes Risborough Tangent Charity Supper in honour of Peta Voss’s grandaughter Zoë. Hannah Bowry held a coff ee and cake morning in memory of her sister, Sarah Lewsey and raised £477.30.Adam De’ath and friends completed the Tough Mudder 2017 London West in honour of Adam’s daughter, Florie. Tracey Oldfi eld, friend to Faye Buckley, successfully proposed Rett UK for a charity donation from her employer TK Maxx, which donated £1,000 in honour of her Faye’s daughter, Olivia.Paul Jenner donated a further £80 achieved from 10% of sales income from his handcrafted walking sticks, in honour of his niece, Madelaine.Daniella Brannan undertook the Derby 10k and raised £270.00 + £55.00 Gift Aid.Elliott Le Warde and his friend Ashton Reed bravely had their legs shaved and raised £390.00 + £52.50 Gift Aid in honour of Elliott’s sister, Rosie. Team Catton – Sam Day and twelve colleagues at Simpson Solicitors undertook the Catton 10k Run and raised £521.10 + £105.90 Gift Aid. Sam explained: “The reason that we chose to support Rett UK as our chosen charity is because one of our colleagues, Zoe Snook’s daughter Lilia has Rett syndrome.Every month, Wakefi eld Prison lights up its clock-tower to support a charity. For the whole of April it was illuminated in purple and green to raise awareness Rett syndrome, in honour of a staff -member’s niece, Molly Steadman-Pilling.

Team Catton

Rosie Le Warde

Wakefi eld Prison

Isobel Egelnick

Sarah Lewsey

Florie De’ath

THANK YOUDonations received in loving memory of: Jim (James) Coughlan in honour of grandaughter, HannahGwendoline Loveday in honour of a family memberColin Shepherd in honour of his niece, Victoria


Marcus Jenson

Grace and Olivia Coster

Callum and Katie

Cheeky Monkey’s Playgroup in Warrington who raised £245 at a coff ee morning in memory of baby Jacob. Grace Coster, again this year, gave up sweets for Lent and raised £110 in honour of her sister, Olivia.Callum Miller and his school, Atherton Community School, held an Easter raffl e and raised £100 in honour of his step-sister, Katie. 9 year-old Marcus Jenson and fellow pupils at Home Farm Primary School raised £197.35 in honour of Marcus’ friend, Lauren Slade. Marcus’ mum Sharon reported: “This all came about because my husband and I were talking with our two boys about Lauren’s mum Sharon running her fourth marathon to raise money for Rett UK and explained that the charity was important because it provides support for families like Lauren’s. We explained that people do all kinds of things to raise money for charity, such as parachute jumps and how we were so impressed with Sharon for running not one, but four marathons, raising a family, working and accommodating the training involved; she is both so impressive and dedicated! Marcus decided that he would like to help and thought a non-school uniform day would be great. He was too shy to ask his headmaster but suggested that I speak to him on his behalf, which I did. Our headmaster, Richard Potter, was most supportive and although he had already decided to have a non-uniform day for Comic Relief, agreed to do it for Rett UK as well and split the funds raised between the two charities. Marcus is kind and thoughtful and we are extremely proud of him.”

Well done to all of

our young superheroes!


Fundraisingby Donna Tinch

VIRGIN SPORT LONDON 10K9th July 2017It is nearly time for this year’s London 10K run. Unfortunately, we do not have our usual places for the 10K this year. However, it is easy to apply directly for your own place at www.thebritish10klondon.co.uk. All applications must be made by 23rd June 2017. Gary Lawson, dad to Kathryn and his family and friends have been avid supporters of the 10K and Gary will be participating in the 10K once again this year, along with previous runners Angela and Lucy Duncan. We are most grateful for their continued support and we would welcome new and previous runners for this event. You don’t have to be a serious athlete, although you are welcome if you are, but you might just enjoy a comfortable jog around the 10K route. The race is not only a great opportunity to see the sights of London without the need to worry about traffi c but also an eff ective way of keeping fi t and of joining family and friends after the race. If you are interested, please go online at www.thebritish10klondon.co.uk and enter for the run. Join Gary and family and Angela and Lucy Duncan for this event and bring a picnic to meet up post-race in Lincoln’s Inn Fields. As on previous race days, the cups for the fastest female and male will be presented at the post-race picnic. Please contact Donna [email protected] or 01582 798 910.

THE BIG HALF4th March 2018We are delighted to announce that Rett UK has ten guaranteed places for London’s newest half-marathon event, The Big Half. This inaugural Big Half will take place on a closed road course in Central London on Sunday 4th March 2018, with the route starting at Tower Bridge and fi nishing by the Cutty Sark in Greenwich. If you would like to apply for a place, please contact Donna [email protected] or 01582 798 910.


REGISTER

NOW!

Easy FundraisingDo you shop online? If so, every time you buy something you could be raising money for Rett UK. Over 2,700 well-known retailers, including Argos, Amazon, Debenhams, Ebay, John Lewis, Next, Marks & Spencer, Sainsbury’s and Tesco, will donate a small percentage of what you spend to Rett UK to say thank you for shopping with them, at absolutely no cost to you! It’s a really simple process; all you have to do is:

Register at www.easyfundraising.org.uk When you’re asked to choose your cause, select Rett UK

www.easyfundraising.org.uk/causes/rettuk At present we have 79 registered users who have raised £509.75 to date through Easy Fundraising. Thank you very much to all of you who have helped to raise this money.

Savoo Search, Save and RaiseSavoo Search, Save and Raise is our fundraising partner and we’d like to share with you this easy and innovative way of donating.

Simply use Savoo Search as your default search engine (the same way as you would your current search engine) and Savoo will donate 1p for every search. If you’re looking to do some online shopping and want to get a great deal, Savoo has thousands of voucher codes and deals that will help you save money and they will donate to Rett UK at the same time.

There are some great voucher deals, especially on clothing, shoes and accessories!

Do take a look at

www.savoo.co.uk/#rettukPlease support us through any shopping you do online.

It costs you nothing! No cost, no catch – raise free donations for us every time you shop online.

Thank you


Might YOU be a RETT UK Champion?If you are inspired by these fabulous people and want to help, please have a look at our events on the facing page. You might also refer to our events page, which we are continuously updating, on our website www.rettuk.org/fundraising/get-involved/eventsWe have free or discounted places in some of these events. If you don’t see anything that appeals to you but perhaps have an idea in mind, please speak to us.We shall provide support with your fundraising ideas, give you extensive social media promotion as well as a t-shirt or running vest, fl yers, etc, to help promote your campaign. Please call Gemma on 01582 798 910 to discuss your ideas.

Parallel LondonQueen Elizabeth Open Park, London - 3rd September 2017Parallel London is a fully-inclusive and accessible push/run for everyone. Disabled and non-disabled people unite to run, walk, wheel, push or be pushed; anything goes! The event is taking place alongside a fun-fi lled family friendly festival that your spectators can enjoy while you are doing all the hard work! Additionally, you can treat yourself to a well-earned selection of food and drink post-race at a variety of stalls. We have ten places available. Take part in one of our fi ve distances (10km, 5km, 1km, Super Sensory 1km, 100m)Parallel London also has a training guide and a handy Q&A to answer any pressing questions. Check out their website at www.parallellondon.com Rett UK will have a space in the charity marquee, so it will off er a base to meet and greet our families and participants.To register your interest please contact [email protected] to see you there!

RETT UK CHAMPIONS...We love to hear about our supporters and them

events you are planning.

Please let us know about your event so that we can support you every step of the way.


Bear Grylls Survival RaceLondon Trent Park – 30th September 2017We are pleased to announce that we have a free place in the Bear Grylls survival event! Set in London’s Trent Park, participants will navigate the wilderness and encounter a range of scenarios in our Survival Zones, like those which would inevitably be faced with while making a way through the Amazonian jungle or facing the harsh waters in the world’s most dangerous oceans.The event has been a sell-out success in the two previous years. We have secured a reduced entrance fee for those who miss out on our free place. Put yourself to the ultimate challenge in which you’ll have a chance at a Bear Grylls Survival Race 5K or 10K. Bring the family along to enjoy the BG Kids Race and BG Festival; there is a challenge for everyone to enjoy!Please contact [email protected] to register your interest and like and follow us on Facebook www.facebook.com/RettUK

2017 EventsIf you are feeling motivated to support Rett UK, please contact the office for more information, email [email protected] or telephone 01582 798 910. To stay up to date with fundraising events and activities, please visit our website www.rettuk.org/fundraising/get-involved/events

Fun RunsColor VibeAugust 27th Essex

Color VibeSeptember 23rd Edinburgh

Obstacle Races/ Fun Runs 5K & 10KGauntelet GamesJuly 22nd Cardiff

Gauntelet GamesJuly 29th Brighton

Parallel LondonSeptember 3rd London

Gauntelet GamesSeptember 16th Manchester

Bear Grylls Survival RaceSeptember 30th London

Half MarathonsScottish HalfSeptember 24th Lothian

10KBury 10KSeptember 17th Burnley

Scottish 10KSeptember 24th Lothian

Sheffield 10KSeptember 24th Sheffield

Obstacle Races 5-6K & 12-16KSpartan Super - MidlandsSeptember 2nd Marston Lodge


NEW BABY!Congratulation to the

Wilding-Hedges family on the arrival of baby, Bertie on

the 7th April.

Bertie and big sister, Frieya

WE HAVE MOVED!

On the 14th March Rett UK

moved office Our new address is:

Rett UK, Victory House, Chobham Street Luton LU1 3BS

General Enquiries 01582 798910

Support Line 01582 798 911

Email [email protected]

[email protected] [email protected]

www.rettuk.org

Rett UK • @RettUK

Congratulations!

Collection TinsWe have updated our collection tins with our new address details. If you have a collection tin, please contact

us so that we might provide you with a new collection tin label.

Please contact [email protected]

or telephone 01582 798 910.


Dr. Alison KerrWe thought that some of the families of the older people with Rett syndrome might want to join us in off ering sincere condolences to Dr. Alison Kerr, whose husband Tom, died in April. Alison was the leading light for Rett syndrome in the UK for many years and devoted a large part of her career to understanding the disorder and sharing that knowledge with other people for the benefi t of people with Rett syndrome and their families. Our thoughts are with Alison at this sad time.

MembershipFamily Companion – have you received it?If you have not received a copy of this useful resource, which is packed with information, it might be that you have not yet subscribed to be a member of Rett UK. Membership is free and it’s really simple to join. Please complete our membership form via our website or contact us on 01582 798 910. It only takes a few minutes of your time and ensures that you receive free copies of our newsletter, invitations to our regional and national events AND your free copy of the Family Companion.

What diff erence 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 diff erence 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.

What diff erence do we make?

BECOME A MEMBER

OF RETT UK


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UNIQUE TO YOUSTUDIO PHOTOGRAPHS IN THE COMFORT OF YOUR OWN HOME

PHOTOGRAPHS AT A SPECIAL OCCASION DO YOU HAVE A BIRTHDAY PARTY / CHRISTENING / A SPECIAL MILESTONE COMING UP?


Might you be a Regional Ambassador for Rett UK?To support our goal of increasing the reach and scale of our work, we wish to establish a stronger regional presence. This will include developing our regional days, local support groups and regional ambassadors, who may be parents/family members/carers or friends of someone with Rett syndrome.

The Regional Ambassador roles are fl exible volunteer positions, with paid expenses. There is an expectation that each Ambassador would be able to attend up to three events per year on behalf of Rett UK, which may involve talking about our work. There is not an expectation on the Ambassador to organise the event but just to be able to attend and speak, if required, about Rett syndrome and the diff erence that Rett UK makes.

Sometimes Regional Ambassadors may be asked to speak to the local press and TV and use social media to help raise awareness, spread campaign/appeal messages and encourage others to become involved.

If you think that is something in which you might be interested, please call Becky at the offi ce, on 01582 798 910, for an informal chat.

THANK YOU TO ALL OUR

DONORS!Huge thanks to all those who have supported us

throughout 2016/17 by paying a donation either monthly

or annually.

If you would like to make a donation to Rett UK please fi ll in the form on the inside back page of this issue of Rett News

or email [email protected] or call us on 01582 798 910.

Thank you.


300 Club ResultsWell done to all those whose numbers were pulled out of the velvet bag!

April 20171st Prize...£30...Steve Jackson

2nd Prize...£20...David Rogerson3rd Prize...£10...Kim Spencer

May 20171st prize...£30...Karen Dixon

2nd prize...£20...Angela Slugocki3rd prize...£10...Margaret Shooter

June 20171st Prize...£30...Bethan Foden2nd Prize...£20...Hilary Truss3rd Prize...£10...Judy Miles

Specialist Post Mortem Examinations

Research into Rett syndrome can greatly benefi t from a specialist post mortem from

brain donation. Information packs are available from our offi ce. 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 benefi t if it takes place within 72 hours.

KEEP UP-TO-DATE WITH THE LATEST RESEARCH NEWS

FROM AROUND THE WORLD Subscribe free to our

monthly E-Newsletter via our website and direct to your inbox

when it is published.

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 which you can fi nd out more

or read the full content.

As with all our services, we welcome feedback and any ideas you have for

future issues.

Sign up for our monthly E-Newsletter

at www.rettuk.org

If you would like to join our 300 Club and receive the full benefi t of our monthly draws, please contact our 300 Club organiser, Yvonne Oliver at [email protected]. She will send you all the necessary details and a registration form.

The winners are:

Front cover images: Families at our fi rst ‘Getting Started with Communication’ event in Scotland.

Please remember!If you move home,

change your phone

number or email

address, to notify us at

[email protected].

Thank you!


Name(s) of Account Holder(s)

Bank/Building Society Number

Bank/Building Society Sort Code

Name and full address of Bank/Building SocietyTo the Manager of:

Address:

Postcode:

Please pay FCC Re Rett UK Ltd Direct Debits from the account detailed in this Instruction subject to the safeguards assured by the Direct Debit Guarantee. I understand that this Instruction may remain with FCC Re Rett UK Ltd and, if so, details will be passed electronically to my bank/building society.

Service User Number

2 7 4 3 4 5Reference No (offi ce use only)

Banks and Building Societies may not accept Direct Debit Instructions for some types of account.

Signature

Date

Instruction to your Bank or Building Society to pay by Direct DebitPlease fi ll in the whole form using a ballpoint pen and send it to:Rett UK Ltd, Victory House, Chobham Street, Luton, Bedfordshire LU1 3BS

I’d Like to Make a Donation to Rett UK

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£2 £5 £10 Other amount (please specify) per month

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Gift Aid Declaration Add 25% to your gift without paying a penny more. Tick the Gift Aid box and for every £1 you give, we can claim 25p back from HM Revenue and Customs.

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 798 910.

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, VICTORY HOUSE, CHOBHAM STREET, LUTON, BEDFORDSHIRE LU1 3BS GENERAL ENQUIRIES: 01582 798 910 / [email protected]

Registered as a charity in England and Wales No. 1137820 and in Scotland No. SC047369 Registered Company in England and Wales Company No. 07339522 • © Rett UK 2017

When your work is done, our’s can still continue...

if you create a legacyWe exist to offer support, information and practical advice needed to help

families deal with the challenges that Rett syndrome presents. We’re here not just for the person with Rett syndrome but for the family as a whole.

A diagnosis of Rett syndrome impacts everyone and we are here when we are needed, both now and in the future.

Bequeathing Rett UK as little as 1% of your assets in a will can be straightforward. Please act now!

By doing this, you are ensuring that help and support from Rett UK is always available for the person for whom you care and have love.

For more information, please contact [email protected]

rett news · dobson (physiotherapy), stacey clough (oral/dental health), adrian kendrick...

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