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Rett NewsSupport today, hope for tomorrow

www.rettuk.orgissue: one/2018

IN THIS ISSUE

Clinical Trial Experience

South Gloucestershire Tea Party

Travelling Abroad

Families Stories

Dr Rett said of people with Rett syndrome:

“They feel all the love given to them. They have a great sensitivity for love. I am sure of this. There are many mysteries and one of them is the girls’* eyes. I tell all the parents to look at their eyes. The eyes are talking to them. I am sure the girls* understand everything but they can do nothing with the information.”

*At the time of this quotation, only girls were known to have Rett syndrome.

RETT NEWS · ISSUE ONE/2018 · IFC HELP SUPPORT US TO HELP SUPPORT YOU

Rett News ContentsRett UK Victory House, Chobham Street, Luton, Bedfordshire LU1 3BS General Enquiries: 01582 798 910 Support Line: 01582 798 911 Email: [email protected] [email protected] Website: www.rettuk.org Facebook: Rett UK Twitter: @RettUK Just Giving: www.justgiving.com/rettsyndromeHONORARY POSTS – PATRONS Lee Allen, Ann Clwyd MP, Dame Evelyn Glennie, Gloria Hunniford, Victoria Murphy, Jon SnowPRESIDENT Yvonne Milne MBEVICE-PRESIDENT Lorna JaffaTRUSTEES Honorary Chairman: Hilary Truss Honorary Vice-Chairman: Tim Addison Honorary Treasurer: Christopher Dickinson Clive Beadle, Michael Britten, Joanna Campobello, Neil Dunford, Philip Gander, Celia Madden Peter Oliver, Julie Owen, David Rogerson Robert Valentine, Rebecca Walker-DateRETT UK STAFF CEO: Becky Jenner Family Support Manager: Julie Benson Office Manager: Donna Tinch Family Support Officer: Patrice Hosier Fundraising Development Officer: Gemma Turner Fundraising Support Officer: Michelle Prendergast Administrator & Events Coordinator: Gillian Bartlett Bookkeeper: Becca Prince

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

Rett syndrome RTT is a rare neurological disorder affecting 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undetected until major regression occurs at around one year of age, when children may lose acquired skills and become withdrawn.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 1IMPORTANT! Changes in Data Protection 2Support Round Up 3Good News Stories Alice O’Brien 6 Naomi Best 7Let’s Talk Holidays 8 Skye’s Magical Trip to Florida 12Grief 14Rett Syndrome Specialist Clinics 16Dr Hilary Cass Retires 17Rett Syndrome Association Scotland is Closing 18Rare Disease Day 2018 19Taking Part in a Clinical Trial 20The Importance of Vitamin D 22Imagine ID 23European Rett Syndrome Congress 2017 – Berlin 24Communication and Education Update 27Rett Education Webinars 29Fundraising Round Up Thank You 30 Jade Wyatt Annual Golf Day 36 Good Luck 38Fundraising Parallel London 2018 40 Virgin London Marathon 2018 41 Amazon Shopping 42 Might You be a Rett UK Champion? 43 2018 Events 44 Recycle for Rett 45Join the Rett UK 300 Club 46 300 Club Results 46Welcome to Michelle Prendergast 47Membership 48 Make a Donation Form 49Legacies BC

Hello and welcome to the fi rst issue of Rett News for 2018, though Spring is now with us. In this issue, we look ahead to the holiday season with a lovely story from a particular family about their trip

to Disneyworld in Florida and how well the airline concerned managed the needs of the passenger with Rett syndrome, including her need for oxygen. To supplement this, Julie has written an informative article about travelling aboard with someone who has complex medical needs; we think you will fi nd it helpful.Focusing on family support, we examine the importance of Vitamin D in helping to prevent acute respiratory tract infections and for better bone-health. We off er an opportunity for parents to obtain a personalised report describing your child’s strengths and challenges, which you may fi nd of use in assessments for services, school or specialist treatments. You will also receive a copy of the beautifully illustrated book, Avery, which siblings particularly may fi nd helpful. Read more about Imagine ID on page 23.The team at Rett UK welcomes a new member, Michelle Prendergast, who previously volunteered for us and was instrumental in organising the Masquerade Ball. Michelle joins our fundraising team for one day per week. With the fi rst UK clinical trial in progress at King’s College Hospital in London, on page 20, I have shared my experience of being involved in the trial with my daughter, Rosie. We are very hopeful that this will be fi rst of several trials which will be available to families in the UK and Ireland. Read more on page 22 about how this work is being coordinated by the UK Clinical Trial Network. We also report on more highlights from the European Rett Syndrome Congress in Berlin. Callie has written a review of the most recent communication training event in Essex. Look out for more dates in your area, as this programme rolls out across the UK.Are you interested in sharing your knowledge and experience with other parents? Maybe you would like to have a local support group in your area? We have training opportunities for parent-to-parent advisors and local support group leaders to gain confi dence and skills in these roles. Read more about this on page 3. We are lucky at Rett UK over many years to have had the support of many professionals. Dr Hilary Cass has been a lynchpin of that support but in March she retired. We take this opportunity to thank her for her enormous contribution and wish her a long, happy and healthy retirement.I hope you enjoy your Spring Issue of Rett News.

Becky Jenner

HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE ONE/2018 · PAGE 1

Welcome from the CEO

RETT NEWS · ISSUE ONE/2018 · PAGE 2 HELP SUPPORT US TO HELP SUPPORT YOU

IMPORTANT! PLEASE TAKE ACTION!Update your details NOW! Dont' miss out on future issues of Rett News!Changes to data protection regulations require you to OPT IN in order to continue to receive our information. We also need to ensure that you have specified HOW you would like to receive that information. Like many charities throughout the United Kingdom, we are reviewing how we communicate with our much-valued supporters. In that context, we want to ensure that the information which we send to you is in your chosen format and covers the areas in which you are interested. This includes enabling you to decline future communications if you so wish.

POSTFor all existing supporters who have received this publication by post, we would invite you to OPT IN positively by confirming your wishes on the on the form which was included in your last Rett News. If you require a further copy please contact us.

EMAILIf you have received Rett News by email please complete the attached form and return it asap to [email protected]

ONLINEAlternatively you may complete the online form at www.surveymonkey.co.uk/r/RettUKContact

We would like to thank all those who have returned their forms or completed them online. For those who haven’t yet responded, we urge you to do so as soon as possible. If you require a copy of the form, please contact Donna Tinch on 01582 798 910 or email [email protected]

Thank you for your support


Support Round UpBy Julie Benson

Volunteer Opportunities with Training! Support group leadersAt the time of writing, we have ten support groups across the UK but we know that more people would like to attend groups and to meet other families.Each group runs differently; some meet once a month, some meet at weekends, while others have their gatherings during the week. Many of the groups meet regularly in the same location while those which cover wide geographic areas alter their locations each time. While Facebook and online groups are supportive and informative, it’s difficult to improve on a good face-to-face chat, with a coffee and a slice of cake.As local authorities see their budgets cut once again, this is reflected in family budgets, with some families seeing their support packages being diminished. Therefore, you may believe it necessary for your group to take on more of a campaigning role to challenge these changes in services. We often hear from people in the same areas experiencing difficulties in accessing appropriate health services. This might be a focus for your group, acting as a patient forum and linking with other local groups such as Healthwatch to improve the health services, to which you may have entitlement, where you live.We want to inspire more people to set up support groups in their local areas. We are receiving useful feedback from our Augmentative and Alternative Communication (AAC) events that people are keen to meet again in communication-focused groups to share knowledge and experience.Might you like to set up a group in your area? We can help. We have an information booklet which can help you before you begin and while you are a support group organiser. Perhaps you may want your group to have a particular focus, such as on communication, or you may wish to invite speakers to meetings. Through the office, we can offer practical guidance on administrative and other matters. Read on to learn about the training for this role.AdvisorsRett UK has a small network of families whose members are happy to share their knowledge and experiences on all aspects of Rett syndrome and its associated symptoms. We want to extend this service and increase the number of such families.We recognise that we are not able to do all this by ourselves and would hope to recruit more people as volunteers to help run the support group and/or be members of the family contact network. To enable us to assist people to build their skills, we are collaborating with the Cleft Lip and Palate Association and can now offer training for volunteers. The dates for training are 28th April London, 12th May Belfast, 19th May Glasgow with a fourth date/area to follow.


We want to offer this opportunity to our current and potential volunteers, as support group organisers or as members of the family contact network.If you would like more information, or to book onto one of these training days, please call please call Julie on 01582 798 911. Travel expenses will be covered.Help with travel costs and/or overnight accommodationDo you need help to apply for funds for travel costs and or overnight accommodation to attend one of our events?Please, the sooner the better, contact our Family Support Team on 01582 798 911 and we will assist you with this process.

Save the DatesRegional Events 2018

WALES 30th June 2018 MIDLANDS 13th October 2018

We need your help! Do you know of or can you recommend a special school for one or other of the above dates and locations? Please contact us with any

information at [email protected] or call 01582 798 911. Thank you.

Rett UK Teaching Communication for Complex Needs Events

(Day 1 Training Day for parents/professionals/carers and Day 2 Communication Groups for people with Rett syndrome and

opportunity to loan devices)SOUTH WEST/SOUTH WALES 16th & 17th May 2018

EAST OF ENGLAND 10th & 11th July 2018NORTH WEST/NORTH WALES 3rd & 4th October 2018

YORKSHIRE 28th & 29th November 2018

Tobii Dynavox Eye Gaze Power Academies(Day 1 Training Day for parents/professionals/carers and Day 2 Communication Sessions to return loan devices)

MIDLANDS 2nd & 3rd MaySOUTH WEST/SOUTH WALES 3rd & 4th July EAST OF ENGLAND 26th & 27th September

NORTH WEST/NORTH WALES 14th & 15th November For further information keep an eye on our Facebook page

www.facebook.com/pg/RettUK/events and our website www.rettuk.org If you are not an internet user please contact us on 01582 798 911.


I N V I T A T I O N

TEA PARTYSunday 6th May 2018, 2pm-5pm

The Old Rectory, Rockhampton, (Berkeley), South Gloucestershire GL13 9DT

Wendy and Michael Britten would like to invite you and your children to a tea party 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


Good News Stories

OUR RETT WARRIORby Caroline O’Brien

Alice was diagnosed with Rett syndrome at 22 months old; she is now 25 years-of-age.Considering the classic symptoms of Rett and all the associated difficulties which accompany this syndrome, we’ve always considered Alice to be a healthy girl, even though she had a gastrostomy at 6 years-of-age and a correction of scoliosis at 12.From a very young age, she has always suffered from constipation and gastroesophageal reflux and has required medication for these issues.Alice does not have seizures but is entirely dependent on others to meet her needs. She is non-verbal and non-ambulant.She was, generally, a happy and sociable girl who enjoyed the company of others. She smiled a lot

and laughed often. She seemed to enjoy life despite all the restrictions which Rett placed on her.We started to notice changes in Alice’s behaviour around 4 years ago. She smiled less and appeared tense. She started tapping her hands more rigorously and aggressively and we had to apply dressings to her hand in an attempt to prevent her damaging her skin.Over of time, Alice seemed to lose interest in things which she had previously enjoyed. She became more socially withdrawn and appeared to be more anxious. She started to rock and to scream on a regular basis. She became distressed during these periods and could not be distracted. Pain-relief had no effect; her sleep pattern became affected; she looked unhappy and sad and started to cry more. By this time, we had already begun the rounds of GP visits, hospital, bloods, tests and specialists. Everything was reported to be ‘normal’, except that Alice’s distress continued to grow and her tummy started to swell daily; she was in pain most of the time.Feeling helpless and frustrated, I contacted Rett UK, which suggested that Alice might benefit from a consultation with Professor Peter Whorwell in Manchester; other families had found his input to be useful.

Alice O'Brien

Professor Whorwell listened to us describe Alice’s symptoms over the previous three years and diagnosed severe Irritable Bowel Syndrome (IBS). We felt relief and anger all at once. Our relief was that we could at last help Alice and our anger was because it had taken the best part of three years of suffering and pain before Alice was diagnosed. Professor Whorwell recommended changes to Alice’s diet and medication, as these were contributing significantly to her IBS and subsequent pain and discomfort.On our return home, a bland, low-fibre diet was introduced gradually. We were to offer Alice one ‘new’ food every fortnight and very closely monitor her reactions to this. Medication was also gradually changed and effects were monitored.What a difference! Now, nine months on, Alice is calm, comfortable and significantly, pain-free. She has adjusted well to her new eating programme. She is smiling and laughing again; she is enjoying life and taking interest in her surroundings; her medication for anxiety has been discontinued and she sleeps better. Welcome back Alice!There is no cure for IBS but symptoms can be controlled. We ‘vent’ Alice regularly, several times a day and continue closely to monitor her diet and any possible adverse reactions to newly introduced foods.We are exceedingly grateful to Rett UK and Julie Benson in the Family Support Team. We are thankful to Professor Whorwell for believing in Alice and us and to Michelle and all the team at Cwmgelli, for supporting Alice in the best way possible.Alice. You have endured so much pain and discomfort with the greatest of dignity and patience. You are my inspiration, our Rett warrior!

A SPOT OF RETAIL THERAPY FOR NAOMI BEST

Naomi Best went to Whiteleys Shopping Centre for the January sales with her keyworker, Laura and her two friends, Dale and Lindsey. Naomi’s home manager, also called Naomi, told us, “Naomi enjoyed looking around the shops and there were bargains to be had. Naomi was looking for a present for her parents’ birthdays but was not successful. She still enjoyed her time out and, as you can see, was laughing as we wandered around the shops.”

Naomi Best enjoying the January sales



Let’s Talk Holidays

It’s that time of year when many of us consider booking our annual family holiday. Don’t let the organisational nightmare put you off; the secret to any successful holiday is good forward-planning.

Most people love to travel and the world has so much to explore and enjoy so why should you be restricted to the UK alone when planning your next holiday?

Some things to consider before booking include:

• What length of trip are you planning?

• Where are you planning to travel?

• Will the temperature or humidity cause any problems?

• What medication will you need to take?

• Do you have specialist equipment?

• What are the luggage restrictions on the plane, ferry or train that you’re taking?

After these initial questions, you should be able to start planning properly for the adventure.


Medication1. Have enough medication for the trip and remember to take some extra with you ‘just in case’.2. It may be an idea for your daughter or son to have a medical identification bracelet. This enables medical staff to identify a problem quickly and easily These can be purchased online through sources such as Amazon and eBay or from High Street stores such as Argos and Boots.3. Keep any medical paperwork with you; this should include: • The GP’s name and contact information • Your full travel insurance information • The names of all medication being taken • A full list of allergies and illnesses4. Travelling abroad with oxygen can be problematic as oxygen can be extremely hazardous when mishandled; you should contact the airline to find out what is and isn’t accepted. When you’re travelling overseas, you should always keep with you a doctor’s letter, outlining the disability, medication and health conditions. Your doctor might write to you to confirm that the person with whom you are travelling with is fit to fly.

Taking medical supplies through customsOther country’s customs regulations may differ from those of the UK, so be prepared. Check the regulations regarding controlled drugs in the country to or through which you are travelling. If you plan, you will reduce the risk of being caught out at the last minute by a drugs law in the country which you’re visiting. Remember, it is up to you to comply. See the Government’s advice on travelling with controlled drugs; its website information is at the end of the article.All drugs should be clearly labelled and you should have a doctor’s letter to hand. Keep copies of prescriptions with you in case you need more while abroad.• Leave all medication in its original packaging, where it is clearly labelled, avoid taking unmarked boxes or bottles• Be ready to answer questions on the medication at Customs • Contact the airline in advance if you have medication that needs to be kept refrigerated • Check with the country and Customs which you’re visiting to find out what’s prohibited

Purchasing travel insurance, with a medical conditionIf you are planning to travel abroad, insurance is vital to ensure that you have sufficient financial cover should hospital treatment or emergency evacuation be required. Planning for the worst is always recommended, so that you have provision in place in the unlikely event of an emergency. Travel insurance should always be a priority, whether or not there is a prior medical condition.


Travel insurance can be more difficult to obtain if you have a prior medical condition and depending on where you want to travel. Check with your insurance provider before booking to find out if there are any exclusions due to the person with Rett syndrome.You should declare any medical condition or ailment at the time of application. Once you’ve declared their medical condition, you’ll then be screened so that the insurance provider can find out more about their condition.It is important that you check your policy and have a clear understanding of what is covered before you travel and about any exclusions that apply. You will need cover for:• Medical expenses if the person with Rett syndrome falls ill or are injured when abroad• Repatriation, to ensure they are able to get back home safely• Travel expenses if they are forced to stay abroad longer than planned, due to a medical conditionBy taking the time to research and arrange travel insurance and ensuring that you have the appropriate cover, you’ll have the peace of mind that you need to travel, suitably protected. We have a list of companies suggested by our families who have used them in the past; contact the Rett UK office if you would like to have the list.

Changing Places ToiletsAirports• Birmingham Airport• Bristol Airport• Cardiff Airport• East Midlands Airport• Gatwick Airport North Terminal• Gatwick Airport South Terminal• George Best Belfast City Airport• Heathrow Airport - Terminal 3• Heathrow Airport Terminal 2• Heathrow Airport Terminal 4• Heathrow Airport Terminal 5• Leeds Bradford Airport• Liverpool John Lennon Airport• Manchester Airport (Terminal 1)• Manchester Terminal 2 Airside• Manchester Terminal 3 Airside• Newcastle International Airport• Stansted Airport (Airside)• Stansted Airport (Landside)

Train Stations • Birmingham New Street Station• Glasgow Central Station (Network Rail)• King’s Cross Railway Station• Llandudno Station• Nottingham Railway Station• Paddington Station• Port Talbot Parkway Railway Station• Sutton Station• Swansea Railway StationBus Stations• Accrington Bus Station• Harlow Bus Station• Haymarket Bus Station• Lincoln Central Bus Station• Middlesbrough Bus Station• North Gate Bus Station, Northampton• Stoke Bus Station• Swansea City Bus Station• Warrington Bus Station


USEFUL WEBSITESCan I take my medication abroad? www.gov.uk/travelling-controlled-drugs www.nhs.uk/chq/Pages/1074.aspx?CategoryID=70Citizens Advice Guide to travel insurance www.citizensadvice.org.uk/debt-and-money/insurance/types-of-insurance/travel-insurance1/travel-insuranceEmergency telephone numbers en.wikipedia.org/wiki/List_of_emergency_telephone_numbersAdvice for the disabled traveller www.disabledtraveladvice.co.ukForeign travel for people with a disability www.gov.uk/guidance/foreign-travel-for-disabled-peopleHoliday information for people with a disability www.dibservices.org.uk/18-holiday-information-people-disabilitySupport for British nationals abroad www.gov.uk/government/uploads/system/uploads/attachment_data/file/317474/FCO_Brits_Abroad_2014.pdfTravel for over-65s & medical conditions www.moneyadviceservice.org.uk/en/articles/travel-insurance-for-over-65s-and-medical-conditionsTravel vaccinations www.nhs.uk/conditions/Travel-immunisation/Pages/Introduction.aspx

Special assistanceIt is important, when you are booking your holiday with your travel agent, travel company or directly with the airline, to advise them If you are likely to need any special assistance during your flights or while you’re at the destination.

‘Special assistance’ might include extra baggage allowance for specialist equipment, assistance boarding the plane, during the flight and/or when arriving at your destination.

Travelling at home and abroadWhether you’re travelling to the airport at home or abroad, give yourself plenty of time to arrive there. Plan to arrive three hours in advance, as this will give you leeway should you suffer delays or traffic on the roads. You should also make sure to know your rights when traveling with someone with disabilities should you encounter difficulties when trying to board the plane at either end.

Planning your transport thoroughly should help the start of your holiday to be as problem-free as possible. Allocate plenty of time and arrange accessible transport for your family member and their equipment.

Remember that their blue badge can be used in Europe, so take it with you if you are planning on driving abroad.

SKYE’S MAGICAL TRIP TO FLORIDAby Sarah Risby

Every year, my husband Adam and I would say that we would love to take our kids, Skye and Ewan, to Disney World. However, we always found an excuse not to go, mainly because of the thought of travelling with a severely disabled child. I had been put off fl ying a couple of years ago when we went to Egypt and were told by the airline that we could not take Skye’s wheelchair with us. We ended up taking a Maclaren Major, which had no support for Skye’s back.It wasn’t until Skye became very ill with pneumonia and sepsis, being placed on life-support in intensive care for two weeks, that we actually talked properly about Florida. If we were going, it seemed like then or never.After doing much research, we booked it at a Virgin Holiday Shop for ten months hence. As soon as it was booked, Virgin could not do enough for us. I spoke by telephone for about 20 minutes to Special Assistance, talking about Skye and what she would need. We took Skye’s adapted wheelchair up to the plane doors, where staff then transferred her to an airplane wheelchair to bring her to her seat. They then took her chair and stored it in the hold. When we exited the plane at our destination, it was there, waiting for us.Virgin had off ered us two types of supported seating for the chairs on the plane but unfortunately neither were suitable for Skye, so they recommended that we buy a Crelling harness, which we did, and it helped greatly.We were able to take all her equipment, which consists of feeding pump, suction machine, nebuliser, Sats monitor, medication and all her food.


Above: Adam and Skye


We booked oxygen for both plane journeys. However, the nasal prongs and pulse flow were not enough for Skye and her saturations dropped very quickly, half-an-hour into the flight. After calling one of the cabin crew, they arranged a portable oxygen tank which offered continuous flow and a mask. Soon her levels on her Sats monitor returned to normal and one of the cabin crew constantly monitored and checked that everything was well.Once we arrived in Florida, we made our way to the Magic Express Coach, which had a lift at the back to allow Skye into it. By staying in one of the Disney hotels, we were able to use buses which had ramps on them for wheelchair users, to go to and from any of the parks.Skye was able to join in on some of the rides, as they had been adapted so that wheelchair users can be wheeled on and stay in their chairs; we and Skye loved being able to do this as a family.One day, while at Animal Kingdom, we were queuing to watch The Lion King Show, when a boy approached and asked, “Does your daughter have Rett syndrome?” We got talking to Elizabeth Halford and her family, whose daughter, Grace has Rett syndrome.Taking Skye to Florida was one of the best decisions we made; she became different child. I don’t think that Skye stopped smiling during the whole time that we were there. At home, we use the suction machine constantly; on holiday we used it once. We didn’t even need to take the nebuliser out of the suitcase; she just didn’t need it. We are delighted that we finally went, after having many doubts and worries, though I would strongly recommend doing research before you go.Seeing Skye’s face, when she met Tinkerbell, made it all worthwhile.

Skye and her family and friends enjoying Disney


Daisy

It has been over a year since our 3-year-old daughter, Daisy, was diagnosed with Rett syndrome. It is a day in my life I will never forget, and a moment I never imagined I would find myself in.My working background is in mental health, and I have spent a number of years supporting people who have experienced trauma, loss and a range of difficult life experiences. But when it comes to understanding and processing my own difficult feelings of loss and grief it is much harder to accept the support I would usually be offering to someone else.

As parents we create images in our minds way before our child is born, whether that be ideas about their personality or dreams we hold for their future. When a diagnosis such as Rett syndrome is received, these dreams, fantasies and ideas are shattered. We are forced to reframe the image we once held of the child we thought we had, and it is highly likely that we will be met with a range of difficult emotions that confuse and challenge us like nothing ever has before.When we first heard of Daisy's Rett syndrome diagnosis, like many parents, I went straight to the internet to look for information, in the hope of finding something positive. I was met with an overwhelming amount of information including lived experiences from other parents who had been where I stood. What I found difficult was filtering through all of this information to work out what would be most helpful. I was met with lots of stories about how life did get better, and how their girls were leading fulfilling and happy lives. But somehow this did not allow me to feel any more optimistic about the future, and in some ways it made me feel worse. How were all these other families managing so well, and why can I only think about all the things Daisy can no longer do?I recently read some work by a psychologist called Ken Moses who has worked extensively with parents of children with disabilities – this brief paragraph summaries what I had begun to experience as a parent of a newly diagnosed child quite accurately:‘I was taught that the way to deal with adversity or pain was to 'tough it out'. If you could avoid showing the pain then you had 'beaten the rap' and dealt with the problem competently. Few would argue that facing the devastating and continuing loss of having a disabled child is among the most painful experiences that a person can confront. I have come to believe that I was given bad advice. I have come to believe that pain is the solution, not the problem’.

Griefby Emily Marsden


Moses explains that the belief in the concept of acceptance can leave parents feeling like failures. Whilst I undoubtedly love Daisy just as she is, Rett syndrome or no Rett syndrome, it just seems unreasonable to feel that I will reach a point where this feels fair and like something I will come to accept. Moses talks about the idea of acknowledgement rather than acceptance, and says that the many theories on grief which take you through a set number of stages (denial, anger, depression and acceptance) are often unhelpful as we experience these stages at different times, in different ways and never in a consistent pattern.We are at the beginning of our journey with Daisy and Rett syndrome; it has been a sharp learning curve and at times it is difficult to imagine how we will ever get to a point where this feels manageable. I often still feel angry that this had to happen to Daisy and it remains painful as I watch my friend's healthy children grow up, as their lives continue along the normal path. It can feel impossible to manage these complex feelings ourselves, whilst at the same time trying to remain optimistic for our children's future. As much as we want to move on and make life as happy as possible for Daisy and her twin sister, it is hard to not keep dwelling on how life could have been. My experience of the Rett syndrome community so far has been equally as confusing as parents seem to be managing grief and loss in so many different ways. The message of optimism and hope, for me, has sometimes felt unhelpful and as if it minimises one of the biggest challenges I have ever had to face.I think it is helpful to acknowledge and experience our difficult emotions rather than expect to reach a point where everything just feels okay again. Once you become part of the disability community, you are flooded with positive blogs and optimistic stories, that for me, made me feel as if I was wrong for feeling devastated. I am not in any way suggesting I think this positivity is wrong; I am constantly amazed by the strength, courage and determination of parents I have come across who are doing incredible things to give their children the best quality of life possible. But I do think it's okay to feel like you can't cope, or to feel like life is really unfair, or to be completely and utterly devastated. The chances are it won't feel this intense forever, but perhaps it's important to live through these feelings rather than try to shut them down.Friends and family often ask what they can do to help and it's usually a struggle to think what to say. In my job as a mental health nurse I always appreciate the idea of validating other people's feelings and I think sometimes this is all I want others to do for me. To validate how someone else is feeling is to simply recognise and accept, not offer advice or try to change things. I generally find it unhelpful when others try to offer me advice around Daisy. As a parent of a child with Rett, our situation is unique and although people might relate to your situation in many ways, the way we feel and want to respond to things is very personal. I have lost count of the number of times people have said something like 'oh my friends brother has special needs, he did this'. I think often this is a way of people trying to show that they understand and want to support you, but to me it highlights just how disconnected people really are from our own daily experiences. Rather than try to solve things, I much prefer it if someone says, 'that must be really tricky, I can't imagine how exhausted you are'. Rett syndrome is pretty rubbish and I would do anything to relieve Daisy of it, but for now it is about trying in whatever ways we can, to make the best of a difficult situation whilst also trying to find the time to look after ourselves.


Rett Syndrome Specialist Clinics

London Clinic (held every 2nd and 4th Monday of the month at Guy’s Hospital, London). This is a multi-disciplinary clinic; in attendance is an occupational therapist, a speech and language therapist and a physiotherapist. Dr Hilary Cass has now retired; we wish her a long and relaxing retirement. Dr Daniel Lumsden, has taken over the role of consultant paediatric, Neurology.

Name: Daniel E Lumsden MB/BChir MA Cantab MSc PhD FRCPCHPlace of work: Evelina London Children’s HospitalArea of interest in Rett syndrome: Specialist Clinic LeadLinks to Rett UK: Regular clinicProfile: Dr Daniel Lumsden is a consultant in paediatric neurology

at Guy’s and St Thomas’ NHS Foundation Trust. Daniel’s clinical interests include children and young people with disorders of movement and tone, and other complex neurodisability. Daniel works as an acute paediatric neurologist at the Evelina London Children’s Hospital and is one of three consultant s working in the Complex Motor Disorder Service and has worked alongside the previous Clinical Lead for GSTT Rett Specialist clinic, Dr Hilary Cass, on a number of clinical projects.Manchester Clinic (held 3-4 times a year at the Manchester Children’s Hospital).The clinic now takes referrals for children and adults. This clinic too has a new lead, Dr Catherine Breen, supported by, when available, a dietician and physiotherapist. Access to eye-gaze technology is also available at this clinic.

Name: Catherine Breen MBChB, MSc, MRCPCHPlace of work: ManchesterArea of interest in Rett syndrome: Management of medical problems. Treatment trialsLinks to Rett UK: Regular clinic

Profile: Dr Catherine Breen is a Consultant Clinical Geneticist, who works in the Manchester Centre for Genomic Medicine. Dr Breen sees patients in the Rett Clinic in Manchester with Professor Bronwyn Kerr, working with a multidisciplinary team. Dr Breen has a particular interest in clinical trials in rare disease.Cardiff Clinic (held 2-3 times a year). Cardiff Clinic takes referrals from children and adults. This is a multi-disciplinary clinic consisting of Dr Angus Clarke, clinic lead, supported by Dr Frances Gibbons, consultant in Paediatric Neurology, Dr Richard Isaacs, learning disability psychiatrist, a physiotherapist and access to eye-gaze technology.Nottingham Clinic (held 3 times a year). This is a paediatric clinic and takes referrals from the local area. Dr Jane Williams is the clinic lead, based in the Nottingham Children’s Centre.


Dr Hilary Cass Retires

We are extremely lucky at Rett UK over many years to have had the support of leading health professionals who have given time, energy and determination to help our families and other professional practitioners to understand more about Rett syndrome. The lynchpin of these has been Dr Hilary Cass OBE, consultant in paediatric neurodisability who, after her initial involvement in the Harper House clinic in the 1980s established a specialist Rett clinic at Great Ormond Street Hospital and since 2009, at the Evelina Children’s Hospital in London.The service has been developed jointly with Rett UK, demonstrating the benefits of integrated NHS and voluntary sector collaboration. In addition, with the support of Rett UK, Dr Cass has operated outreach and teaching services in child development centres around the UK. She has published many papers in this area and as well as holding several regional and national roles in medical education and policy development. These have included roles as Head of the School of Paediatrics for London and President of the Royal College of Paediatrics and Child Health.

She has been an invited speaker at many national and international conferences, including those in Australia and New Zealand. She is the chair of trustees for the charity, Together for Short Lives, which provides support to families who have children with life-limiting disorders. This long and distinguished career and her significant contribution to children’s disability services was recognised formally when she was awarded an OBE in 2015. We are deeply grateful to Hilary for all that she has contributed, which has hugely benefitted our families and increased the understanding of Rett syndrome on many levels and for a variety of audiences. She will be greatly missed but we hope this is ‘au revoir’ and not ‘goodbye’!On behalf of all our families, staff and trustees, thank you Hilary. Becky Jenner, CEO and parent

We are delighted to report that Daniel Lumsden, Consultant Paediatric Neurologist, Complex Motor Disorders, will be leading the Evelina Rett Clinic.

Dr Hilary Cass


Rett Syndrome Association Scotland (RSAS) is Closing

It is with regret that we heard that the Scottish association is closing at the end of March. Started in the same year as Rett UK by Isobel Allan, the association has provided vital support to families, including an annual family weekend at an outdoor activity centre. It also directed funding towards research, which is now bearing fruit. Isobel died in late December 2017 and no new trustees have offered to continue the work of the association. Rett UK is registered as a charity in Scotland and held a regional event in Glasgow in 2016, followed more recently with a communication event. We are keen to ensure that families affected by Rett syndrome in Scotland can continue to access support, information and advice. We have events planned. The first is an opportunity for parents to train as volunteer support group organisers or as parent-to-parent advisors. We would value hearing from parents who are interested in this role. The training is on 19th May in Glasgow. Travel expenses and childcare costs can be met if needed. Please email [email protected] for more information. Having access to local support is very important to our families, so this will be the first step to ensuring that is available. Our Family Support Manager, Julie Benson will be visiting Glasgow on May 19th and would love to meet families, regardless of whether or not you want to be involved in the training. It will be a good opportunity to hear how you think we can best support you in Scotland. Please look out for further information in this regard. We know that some of the Scottish families were members of both associations and if you are receiving this Rett News then clearly you are in touch with us already. However, if you know of a family which is not receiving access to our services, please encourage them to contact us.

DON’T FORGET!Please remember to fill in and return your data protection form asap! See page 2 for further details.


Rare Disease Day 2018 by Leah

Here, Leah tells us why she supported Rare Disease Day 2018 and about her blog.

What is Rare Disease day?On 28th February, over 94 countries and regions across the Globe showed their support for Rare Disease Day, which is a campaign that helps raise awareness of 300 million people worldwide, with 6000 different

rare diseases. Rare Disease Day’s main objective is to highlight rare diseases and the impacts they can have on people’s lives. The campaign primarily targets the public but also health professionals, researchers, policy makers and public authorities.

Why is it important?It is essential to promote Rare Disease Day and rare diseases, because 1 in 20 people will live with a rare disease at some point in their lives. In making the campaign more noticeable, Rare Disease Day can also encourage researchers to join the campaign. This is enormously effective, as many rare diseases have no cure. It is important that this campaign continues to thrive, as not only does it help those with a rare disease but it also brings it to the attention of the public and improves knowledge about rare diseases.

Why me?My name is Leah and I’m 14 years old. I live with my parents and two sisters. I was inclined to write this as my youngest sister has Rett syndrome. Regardless of my personal connections, I truly support and admire this campaign and believe that it is imperative that people are aware of rare conditions that others may have. Among the many rare diseases for which there is presently no cure, Rett syndrome is one. Over the next few months, I will be uploading weekly blogs to the Rett UK website about my experiences as a sibling of someone with Rett syndrome. I hope that, for parents, it may be an eye-opener from a different perspective and for siblings like me, I can communicate with you and maybe make you feel less alone. Thanks for reading my article. Until next time…To read more of Leah’s blogs: www.rettuk.org/resources/resources-for-families/blog


Taking Part in a Clinical Trial by Becky Jenner

Becky Jenner, CEO at Rett UK, writes about her experience so far with her daughter Rosie in the Sarizotan trial at Kings College London. This is the first trial in the UK for Rett syndrome and as the drug, Sarizotan, is aimed at helping with apnoea’s and hyperventilating, my daughter’s biggest daily challenge, I was very keen to get her on the trial. There were several things I needed to know about before committing Rosie to this trial; safety was top of my list. As this is a re purposed drug (originally developed to help people with schizophrenia and Parkinson’s) we knew it had already been extensively tested in people and had a very good safety record but sadly was not effective in helping people with those problems.

I also wanted to know that if the drug was effective, could she stay on it after the trial or was it going to be taken away from her, which would have felt very cruel at that point. We were delighted to learn that she would be able to stay on it at the end of the trial as long as no one had any significant adverse reactions and it suited her. Now I was ready to do the initial screening, which was a phone call with Rachael Stevenson to check on some basics like her weight and age – the initial cohort recruited for the trial were age 13+ and had to be at least 25kgs. Was I also prepared to put Rosie on the contraceptive pill as the drug had not been tested on unborn babies. Whilst the chances of Rosie becoming pregnant were extremely remote it was still a requirement to be able to take part in the trial. Then we received all the paperwork explaining exactly what was involved if she was accepted onto the trial and had our first visit to Kings College London where Dr Santosh and his team ran the trial in the dedicated clinical trials facility. This was baseline screening where bloods were taken, height, weight and blood pressure etc. She coped really well with all this except the blood tests – in common with most people with Rett syndrome her veins are small and collapse easily so she ends up like a pin cushion. Reverse Rett have now bought a vein viewer for the clinical trial so much easier to see where her veins are before they put the needle in. Thank you Reverse Rett!We then left with the Bio Radio kit which is used at home to record the breathing. This is a bit like the sleep study kits you may have used in hospital. Rosie could

Rosie and Becky


carry on with her normal activities (except if it involved water!). It consisted of a finger probe recording 02 and two stretchy bands – one around the chest and one around the stomach. This was all wired up to the recording unit. I then had to run this for 6 hours over 3 consecutive days for the initial screening and before all subsequent visits to Kings. Rosie was very patient with this and it did not cause her any undue stress. At the end of each six-hour session of recording I uploaded the file to the Bio Radio website along with the details from a paper diary you also have to keep showing the start and end time of the session plus times when eating, sleeping or having a seizure etc. You had to pause the recording for certain events and then re-start it. This was recording all her breathing patterns.Once this had been analysed we were delighted to hear that Rosie had been accepting onto the trial and we were given the dates for the next visits which involved a couple of overnight stays. This was so she could be monitored for any adverse side effects once given the medication.This first part of the trial is a double-blind placebo trial (so we don’t know and the doctors don’t know) whether the patient is getting the drug or a placebo. If she was getting the actual drug it could have been a 5mg dose or a 10mg dose, both twice a day. We would find out eventually but not at this stage.It was a slightly nerve wracking but also exciting moment when she was given the first capsule (which is dissolved in boiling water and given via her peg). We really did not know what to expect. Would she be ok? Any different or just the same?Over the next few months we had a number of scheduled visits back to Kings including a couple of overnight stays in the hospital. You don’t have to share the unit with anyone else and parent carers do get proper beds! There is also a nurse on duty overnight who will only wake the parent carer if there is a concern. Apart from the blood tests which Rosie got upset about as soon as we arrived as she knew by then what was coming, she coped really well. All the team there are really lovely and super helpful which made a difference. The travel expenses and any overnight accommodation needed are paid for by the drug company so you are not out of pocket but clearly this is a big-time commitment especially if you live further away, are working and/or have younger siblings to care for too. These are all things that you should consider when embarking on a trial like this but it is all very clearly explained up front and you can pull out at any time.We have now finished the first 24 weeks and are now in the ‘open label’ part of the trial which means we know she is getting a 5mg dose twice a day. We don’t now have to do the Bio Radio recordings but we do still have to go to Kings regularly so she can be monitored.As this is an active and ongoing trial, we cannot, at this stage comment on any changes we have seen positive or negative. I can only share with you our experience of being in the actual trial itself. Many thanks to all the charities and researchers involved in getting Sarizotan to this stage and to Reverse Rett, Dr Santosh and his team for all their help in facilitating and running the trial.


UK Clinical Trial Network You will have seen news about the STARS trial for Sarizotan, which is hoped will help with some of the breathing difficulties experienced by people with Rett syndrome. It appears likely that other trials will be established in the UK soon.Some of the clinicians and researchers working in the UK and Ireland have established a clinical trial network to coordinate this work, as they were being approached by various drug companies and we have been requested to recruit families to trials. The group, whose members are Ana Abdala, Adrian Kendrick, Angus Clarke, Michael Absoud, Daniel Lumsden, Hilary Cass, Catherine Breen, Jane Williams, Bronwyn Kerr and Daniela Tropea, has reviewed possible candidates for trials and is narrowing them down to a couple which seem to have the best chance of success, have the best safety information and are near to being trial-ready. It is hoped that these will be multi-centre trials and Rett UK will help to recruit families from across the UK and Ireland. We will bring you more news as this work develops.

The Importance of Vitamin D

Did you know that Vitamin D supplementation can help prevent acute respiratory tract infections, a fairly common problem for people with Rett syndrome? Furthermore, it is important for bone health. We also know that osteopenia and if more severely affected, osteoporosis, is a concern in Rett syndrome. They can be made worse by the long-term use of anticonvulsants, carbamazepine, phenytoin, primidone and sodium valproate. A supplement of Vitamin D is recommended. Vitamin D is primarily made in the skin by exposure to sunlight but occurs naturally in some foods, though not in high quantities. Oily fish (such as sardine, pilchard, herring, trout, tuna, salmon and mackerel), egg yolk, red meat and liver are sources of Vitamin D. However, deficiency symptoms may not be obvious until it becomes severe (soft bones that cause rickets). More people have low Vitamin D levels in the Winter and Spring because of less exposure to sunlight and obviously this when cold and Influenza viruses are at their peak. Vitamin D supplements can be in tablet or liquid form. The recommended dose for anyone over 1 year-old is 10 micrograms (400 international units) per day. You can buy vitamin D supplements at pharmacies and health food shops but, as with any supplement, always check first with your GP, who can advise on the most appropriate dose.


Imagine ID

If your child is aged 4-18 years, here is an opportunity to take part in a study through which you receive something back. IMAGINE ID stands for ‘Intellectual Disability and Mental Health: Assessing the Genomic Impact on Neurodevelopment’. The study aims to answer one of the questions that parents often ask when their child has a genetic condition: ‘What does this mean for my child?’Funded by the Medical Research Council UK and taking place at the University of Cambridge, University College London and Cardiff University IMAGINE ID wants to collect information on 5000 patients by March 2019.

What’s involved?Families are asked to complete an online questionnaire through a secure internet connection. The questionnaire asks about your family’s medical history and about your child’s development and behaviour. It takes around 3-4 hours but you do not need to complete it all in one session as your responses will be saved as you proceed. It can also be completed by phone it you prefer.

What you receive You will be sent a personalised summary report based on the information which you have provided. It describes your child’s strengths and challenges, with ratings about whether your child’s behaviour is close to average, slightly

raised, high or very high. This might be helpful with assessments and arguing your case for therapies and support. You will also receive a copy of the beautifully illustrated children’s

book, Avery. ‘Avery is like other birds most of the time, but sometimes, feels a bit diff erent. But Avery is not alone’. This may appeal to younger siblings. Please visit IMAGINE ID’s website to fi nd out more at imagine-id.org/taking-part, where you can enrol to take part in the study.

Does your child have learning diffi culti es?

Do they have a geneti c diagnosis?

Are they aged 4 or over?

We need your helpJoin our research project

[email protected]

01223 254631

Images ©

Positi ve Exposure

Imagine ID is funded by the Medical Research Council UK

raised, high or very high. This might be helpful with assessments and arguing your case for therapies and support. You will also receive a


Many thanks to members of Rett syndrome Europe for their reviews of the Berlin European Congress, which we share with you here and in the next issue of Rett News.

World Café by Stella PeckaryA unique session was the so called ‘World Café’. It was organised by Dörte Maack, a blind facilitator and Hans-Jürgen Christen, Master of Medical Education, Hanover. Approximately 150 participants were split into six groups with around 25 people in each. Then, each group was divided into four subgroups with 5 to 6 people in each, to discuss one subject at one table. On each table was a moderator, who led the group through the discussion of a designated subject, these being epilepsy, transition, breathing disturbances and sleeping problems and communication. Parents, siblings and carers of Rett syndrome patients joined the group, along with therapists, researchers and clinicians. The cross-national discussion occasionally became quite emotional. Sometimes it was overwhelming, with all participants agreeing with the experience that one person recounted on a subject; several questions arose because of medical issues. The advice and medical knowledge of experts, who moved between the groups, was of enormous value. After 12 minutes, participants switched to the next table and therefore to the next subject. As the moderator took shorthand notes for each group that he hosted, after 70 minutes he summarised and passed them to the experts for each subject. Experts on epilepsy were Thomas Bast and Bernd Wilken; on transition were Helen Leonard

European Rett Syndrome Congress 2017 – Berlin


and Leslie Malton; on breathing disturbances and sleeping problems were Jeremy Turk and Jan-Marino Ramirez; on communication were Gillian Townend, Helena Wandin and Theresa Bartolotta.In the subsequent plenary session, the experts for each section pointed out the multiplicity of personal aspects of coping with everyday life which a family with a Rett patient faces. It seemed that even the clinicians were emotionally aff ected by the diffi cult problems which families have and how they seek to manage them for the happiness of their child.

Country-update: Berlin 2017 by Stella PeckaryA ‘poster walk’ of 27 posters with a country-update of 25 Rett Associations took place on the Friday, during lunch-time. This was an opportunity to fi nd out what is happening in the Rett Associations throughout Europe. A representative of each country was invited to speak briefl y about recent activities, National Centres for Rare Diseases and Rett specialist services in their country. The wishes and aims for the future of each Association were a critical points, as were an appreciation of common wishes, special diffi culties and how a network can bring the associations closer together. Without exception, these were parent-led organisations. All shared a determination to do the best that they can for people aff ected by Rett syndrome.Both Rett UK and Reverse Rett had posters giving an overview of the main areas of their work and highlights from recent years.


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.

Epilepsy by Leen VangroenwegheProfessor Doctor Thomas Bast (Germany) began the interesting session about epilepsy. Between 60% and 80% of people who have classic Rett syndrome have epilepsy. However, it is not among of the diagnostic criteria for Rett syndrome, because it hardly ever starts before the age of two. The highest seizure activity typically occurs between the age of seven and twelve. Both focal or generalised seizures occur but the typical absences and clonic seizures are not usually seen in people with Rett syndrome. For those who have epilepsy, the seizures are often less severe (or even gone) once puberty has passed and some can become seizure-free even after stopping their anti-epileptic drug.However, even with the technology of EEG, it remains difficult to be certain whether a seizure is epileptic or not. Most people with Rett syndrome have a disturbed EEG but that does not signify that the seizures are of an epileptic nature. Many seizures are misdiagnosed as epileptic while in fact they are typical Rett behaviours linked to the autonomic dysfunction that causes breathing or sleep abnormalities.68% of the parents report that the epilepsy has a negative impact on quality of life with diminished levels of alertness, problems in communications and walking identified most frequently, in addition to the fear of seizures and the problems finding help at home. Professor Doctor Aglaiea Vignoli (Italy) talked about the various anti-epileptic drugs. The most frequently prescribed drugs are carbamazepine, valproic acid and lamotrigine; which drug works is somewhat age-dependant. Studies show that sodium valporate is more efficient in younger children, with carbamazepine and lamotrigine in older people. The spectrum and rate of side effects of the drugs in people with Rett syndrome is comparable to what is seen in other patients with epilepsy. Side effects can be irritability, sedation or weight loss.Regrettably, 30% of people affected do not respond to anti-epileptic drugs. Non-pharmacological treatments may be tried, such as the ketogenic diet (a high-fat, low-carbohydrate, adequate protein diet) but constipation is a well-known side effect of this treatment. Vagal nerve stimulation is also an option but here pain and coughing are the most common side effects. Experiments with cannabinoids are being done but the lack of standardisation and regulation, imprecise dosing and possible side effects pose risks with this treatment.

Communication and Education UpdateBy Callie Ward

In November we had our North East Augmentative and Alternative Communication (AAC) training days. The first day was a full training day with family members, carers and professionals who support those who have Complex Communication Needs (CCN). We learnt about how and why it’s important to use a robust communication system – that’s a system with lots of words including pronouns, describing words, verbs, nouns and phrases – from the very beginning. The second day was an opportunity for attendees to return for a communication group with the person with Rett syndrome. Some people who attended already had devices and we were able to support them with these, while others borrowed our loan devices. A big thank you to Cassidy Harm who was over from Canada and helped us with these days, as well as Debbie Breslin and Emily Lorimer from Tobii Dynavox.In January we all met again. This time the training day was focussed on the technicalities of the eye gaze devices. It was run by Debbie and John Liddle from Tobii Dynavox and we got to learn all the details about how to calibrate and use the devices even more successfully as well as lots of handy tips and tricks. This was followed by a second day of meeting with the people with Rett syndrome to hear more about how their time with the device had gone and to discuss their next steps. Here’s what two of our families said:

“Jason and I attended the AAC training day back in November then returned the 2nd day with Jessica, we had previously attended the Rett UK Regional Day in July and had a session with Callie and Debbie from Tobii Dynavox, Jess immediately blew us away with how fast she picked up using the device to communicate, so we were very keen to attend the training sessions and get as much knowledge as possible, Jess has used an eye gaze at school for 4/5 years, but was still at the game stage which frustrated me immensely, I knew Jessica was capable and had so much to tell us, this again was shown when she attended with us on the 2nd day in November, for the first time ever she told us she needed the toilet, wanted a cup of tea amongst a whole load of other things. Thanks to Rett UK we were able to loan the device for 2 months, some days Jessica was full of herself and conversation, other days she didn’t want to talk, we still have a long way to go but can’t wait to have Jessica’s own device to further her communication journey, I would definitely recommend these days to other families looking for a voice for their silent angels, thank you so much Rett UK and Tobii Dynavox.”Claire Kemp, Mum to Jessica



People with Rett syndrome and their carers at our North East AAC event

“We attended the 2-day AAC course in Gateshead in November 2017 together with our SaLT and class teacher. The course was run by Callie Ward from Rett UK together with Tobii Dynavox – Emily Lorimer SaLT and Debbie Breslin, Senior Account Manager. The first day was well structured with Callie and Emily, in the main, running through the challenges faced by Rett Syndrome sufferers in their attempts at communication. Debbie covered a lot of the hardware devices and software packages available. During this two-day course, it was nice to have access to people who have used eye gaze, both from professionals and families who have personal experience of using the equipment, systems and software. Seeing Callie and Emily demonstrate how to model using low-tech communication was particularly helpful. For example, “You’re looking away from me. I think that means you’re not wanting that.” It was not something which came naturally to us and we need to keep practising it, or as Callie would say, model, model, model. The importance of establishing Yes and No to check on interpretation was also covered. This is easier said than done and again, we need lots of patience and practice. On the second day of the course, our daughter Rebecca attended to try out the eye gaze kit with Emily helping her. Rebecca was a bit distracted by seeing new faces which she found much more interesting than looking at a computer screen. We returned home with our kit and tried to get up and running as quickly as we could. As I have previously said, we were out of comfort zone as now we were learning a ‘new language’ and had to change the way we were communicating with Rebecca. The course does make you think carefully about means of communication. We tried to obtain as much video evidence as possible and submitted some clips to Callie for her assessment and feedback. This felt very strange again, but we just had to try and forget that there was a video camera running. We tried to use the low tech and hi-tech communication systems simultaneously. Receiving feedback from Callie was hugely beneficial to us as it helped us to make improvements to our style and technique. If I had to offer up any advice, it would be to try to get your school SaLT and teacher on board as that is half the battle won. Eye gaze isn’t a ‘miracle solve everything device’. There’s still a lot of hard work and practice for everyone involved in all aspects of the child’s life.”Carol Pullen, Mum to Rebecca


It was great to see their videos and hear their stories and be able to support them in the challenging process of learning to use a communication device. In January 2018 we got to do it all again in London/Essex with the help of Jenifer De Almeida from Tobii Dynavox, Anna Knight, Gill Townend who visited from Maastricht as well as Hana Rún Eiríksdóttir who visited from Iceland – a big thank you to them all! We look forward to hearing more about how the families with the loan devices got on when we meet again in March. Meanwhile, we are enjoying the videos they are sending us. If you are interested in attending one of these days and borrowing a loan device, the next training days are on 16th & 17th May in the South West. Go to the Rett UK Facebook page and website for more information and booking.

Rett Education Webinars rettsyndrome.org

We are delighted to bring you this impressive resource from our colleagues, RettSyndrome.org, (formally known as International Rett Syndrome Foundation) in the USA. RettEd is a monthly series featuring expert speakers on various Rett-related research and care topics, sponsored by Rettsyndrome.org to help build your personal pathway to empowerment. At the end of each webinar, you will have a chance to ask questions and hear questions from others. There is no cost to participate, but online pre-registration IS required. After you pre-register you will receive a personal login code via email that will allow you access to the webinar.To suggest a topic for RettEd, please email [email protected]. The first webinar for 2018 was with world-renowned Rett expert Dr Alan Percy, who presented a genotype and phenotype discussion from the data collected from the longitudinal Natural History Study of Rett Syndrome.The second webinar was about Respiratory Issues in Rett syndrome, especially during the Cold and Flu season, with Marianna Sockrider, MD, DrPH, AE-C, TCH.We recognise that these are on North American time but they are also recorded and available to view from the website www.rettsyndrome.org/RettEd.


A really big thank you to all of our incredible fundraisers.Our thanks are due to Simon Davis and Craig Payne who completed a 5km run on 16th December in honour of Ruby, raising £400. Ruby’s mum Timi, told us, “Craig actually ran 10km, as there were meant to be 3 people and one didn't turn up. They are wonderful! I met Simon and Craig only when I was fundraising for an eye-gaze device for Ruby. Simon has completed three events so far and hopes to continue raising money and awareness.”Helen Buckley and colleagues at Kirklees Council Customer & Exchequer Services raised funds by putting stars on their office Christmas tree in lieu of sending Christmas cards, in honour of Helen’s grand-daughter Olivia, raising £370.Andrew Coutts, with his old school band members Mark Sandel and Nick Robins organised a gig in Southend in loving memory of Andrew’s cousin, Alison Wilcox. The band, KIEV, split the funds raised three ways and Rett UK was delighted to receive £600. Alex Melville raised £471.25 and much publicity by organising a cake sale at the Co-Op Charity Weekend, in honour of her niece.Diane Lewsey deserves thanks for her continued support in memory of her daughter, Sarah. Diane holds fabric-swap events, makes and sells cards, bags and bibs and donates all proceeds to Rett UK.Mablethorpe Conservative Club raised funds for several charities and we were grateful to Corinne McNamara, who attended their coffee morning to collect a cheque on behalf of Rett UK. £150 was donated. Special thanks go to Corinne and Fred at Estuary TV for the media coverage which was given.

Simon, Ruby and Craig

From left: Louise, Sharon, Catherine, Tony and Gill

Alison Wilcox

Sarah Lewsey

Fundraising Round Up by Donna Tinch

THANK YOU


Dorset Masonic Shooting Association held a Club Launch and Family Fun Day on Saturday 2nd December and raised £300 for Rett UK. The event consisted of teams competing in five separate target sports. Zillah and Michael Rainback and their daughter, Hannah and their sons attended the event on behalf of Rett UK.Anne Cardy challenged herself to learn to crochet for Rett UK, after joining the DofE award scheme. Anne explained, “To make it more interesting, I have been sourcing a variety of rare breed sheep fleece to card and spin my own yarns. The knack is to spin the fleece to produce a similar weight yarn throughout the types. I want to crochet sixty granny squares, one for each year of the award scheme.” Anne raised an impressive £260 + £30 of Gift Aid.Liana Jillians undertook a ‘colour run’, raising £82.00 + £10.50 of Gift Aid in honour of Cassie.Philip Prodromou. Thank you for further donations in support of your Vitality 10K London, bringing the total raised to a substantial £1,395.50. Grace Watson raised £115 recently. Her mum, Gwenda, told us, “It was a good amount raised and I am pleased that we have helped. Grace has been invited for a few years to Epsom Hospital to be a patient for the MRCPCH clinical exams. For the first time, Epsom hosted a pre-exam afternoon in January, organised by Marie. Doctors who are sitting the exam this year were able to participate in mock clinical exams. Grace was a patient for the afternoon. Each doctor who participated gave a donation to charity and I asked for a donation to Rett UK. The candidates were so appreciative of our time and were nervous but they all did well and surprisingly, someone in each group suggested that Grace may have Rett syndrome. It allowed them to ask me questions about Rett and they thanked me for permitting them to meet and examine Grace. I like to help, in the belief that it is a small way to show gratitude to the medical profession which works with us to look after Grace. It is interesting and encouraging to see doctors gaining knowledge of Rett, especially as it continues to be classed as a rare condition.”

Dorset Masonic Shooting Association, from top: Rainback’s team; Hannah’s brothers; Phil Coxall presenting the cheque to Michael & Zillah Rainback and their daughter Hannah

Grace Watson


Tim Addison has donated £500 in speaker fees in honour of his daughter, Emily.Arnold Hill & Co. made a generous donation in lieu of sending Christmas cards, in honour of Emma.Castlemorton Church Christmas Brass held ‘Christmas Cheer’ in aid of Rett UK, raiseding £630 + £32.50 of Gift Aid in honour of Clare Milne. Sincere thanks are owed to Mr. Jeffery, Mr. Herbert and to every member of the Ledbury Community Brass Band for their support again this year.Natalie Nicholson: ‘Team Chloe’. “On 15th October 2017, a group of us embarked on a 10K walk to raise money for Rett UK. Kindly organised merely a few weeks previously by Karen Kitson, the route had been tried and tested on several occasions by Karen and her husband, Chris. Some of the other ladies to whom I teach a Zumba class also joined us to support the walk and put focus on Rett syndrome. It was a surprisingly mild, dry morning when we set off from the local community centre and my daughter, Chloe, who has Rett, waved us off and greeted us with her grandma, when we arrived back there later that day. Obviously, we stopped en route for the obligatory cup of tea to sustain our spirits. We were especially thankful to the coffee shop staff who opened especially for us on a Sunday morning to support our efforts. In all, we raised a most satisfying £971.63. As a pleasant consequence, the caretaker at the local community centre from which we began our walk offered us free use of a table to sell donations at the monthly table top sale, in aid of the charity. Efforts by Karen and Chris recommenced, with the help of June Smith, my mum, dad and Chloe and asked for donations from family, friends and my Zumba ladies, raising a further £270 at two table top sales by selling the donations.”‘Team Chloe’ did us proud and I hope that more families will benefit from the fundraising efforts of this wonderful team.Vicki Kitson and David Williams held another Coffee Morning in support of October Awareness, in honour of their granddaughter Emily.Vicki told us, “On Friday 17th November we held our second coffee morning to raise funds for ‘Team Chloe’

Emily Addison

Emma Walker-Date

Claire Milne


Rett UK. Family, friends and neighbours came round to share cake, coffee and a natter. Young and old joined in and many donated raffle prizes. Friends from long ago met up after many, many years and all in all it was a great success. It was a happy occasion to celebrate the life of our gorgeous granddaughter Emily and we were delighted to raise £725.Becky Jenner said, “We are very grateful for the continued support of the Kitson family who have done numerous fundraising initiatives for us. Amy and Brian Kitson are running in the London Marathon 2019 for us now!”

Organising a coffee morning or taking a skydive not your thing? There are still many other ways in which you can raise money for your charity. Every effort is hugely appreciated and helps us continue to provide invaluable support to our families. With your help, we look forward to developing our services further.

Donations received in loving memory of: Graham DuncanMr. FiddiesRuby ForthStacey MorseMr. Thoroughgood

Vicki and David’s coffee morning

Collection TinsWe have updated our

collection tins with our new address details. If you have

a collection tin, please contact us so that we can provide you with a new

collection tin label. Please contact

[email protected] or telephone 01582 798 910.

THANK YOU TO ALL OUR DONORS!Huge thanks to all those who have supported

us throughout 2017 & 2018 by paying a donation either monthly or annually.

Thank you to those donating via direct debit, whether its £2 or £10 a month,

it all counts.If you would like to make a donation to

Rett UK please fill 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.

Stella’s ‘Pop-up Christmas Fayre’Stella Robertson, mum to Maddie, organised a ‘pop-up Christmas fayre’ in late November, in a barn on her farm. She made gifts, jam, cards (with which Maddie helped) and wrapping paper. Stella and her husband make children’s play equipment and her brother Paul uses the off -cuts to create handmade wooden gifts, which he sold at the event and donated 10% of his sales income. Maddie’s music therapist, Shirley Stump attended and gave head massages for donations. Neighbours, family and friends attended the event making it a huge success. Stella reported: “Huge thanks to Denise House and Claudia Callingham, Maddie’s carers and dear friends, who were a great help to me, I couldn’t have managed the event without their help. We are delighted to have raised over £1,300 in support of Rett UK.”



Sandy & Peter Andrew’s ‘Pop-up Shop’Sandy Andrews, organised a ‘pop-up shop’ in honour of her grand-daughter Emily. Sandy’s husband, Peter tells us, “Sandy spent many weeks making a range of Christmas decorations, stockings, bunting, little paintings and clay fi sh in frames. The rest of the family joined in too; Katy made ‘lemon’ chopping boards, aprons and cute little soft rabbits; Lucy made delicious meringues and popcorn and Charlie and his partner managed the till and generally were extremely helpful during the weekend. Sandy’s good friend, the glass artist, Maggie Barton, came and sold many of her lovely pieces. We had a most generous and large donation of fashion jewellery from friends who manage a jewellery business. Additionally, we had many welcomed donations of raffl e prizes which went towards the tombola.Our kitchen became a shop which spilled out on to the veranda, which we enclosed with gazebo sides. We off ered mulled wine and snacks and asked almost everyone we know to come and join us, so that it became quite a weekend open party which everyone enjoyed. We are pleased to have raised £1,250 towards Amy’s and Brian’s London Marathon places for 2019.”Thank you Sandy, Peter, family and friends for your continued and generous support in honour of Emily.



For the past eight years, John and Lucy Wyatt have organised an annual auction and charity golf day in loving memory of John’s daughter Jade, who, sadly, passed away in 2009. To date, John and Lucy have raised over £27,000 for Rett UK, a phenomenal amount, and we are truly grateful for their continued support. Our heartfelt thanks go to you both, John and Lucy, for your enormous eff orts and to your friends and family, who support your events every year. Here, John and Lucy write, “Jade was a beautiful girl who always wore a smile on her face. She was remarkably brave and strong, overcoming numerous obstacles and teaching us to look beyond the surface, no matter how diffi cult life can be and that if you adjust your outlook in life, you can overcome anything. Even though our hearts are broken, Jade has left us with a purpose in life, which is to strive on and help others. We decided to focus on raising money for and awareness of this worthwhile charity by setting up an annual golf day with a raffl e and auction in the evening. We are fortunate to have the support of our friends and family and are extremely grateful for their continued contributions and kindness. We have tremendously helpful friends in Robert and Linda Arthey, who have helped us create this magical day and have shown us great strength as they have helped us raise the money that we have collected to date.

Jade Wyatt

Bobby Arthy and John Wyatt

JOHN & LUCY WYATT ANNUAL

GOLF DAYin memory of Jade

“Our family has never been the same since you left but we know you are with us in spirit every day.”


Each year we are overwhelmed by everyone’s kindness and continued contributions; it helps to take a moment to refl ect on Jade and to remind ourselves how satisfying it is to be able help families aff ected by Rett syndrome. Special thanks are owed to Robert Arthey, Gary Pooley and Ian Galvin who contribute heavily every year, and to Ronnie Jaff a for attending.”Ronnie Jaff a, dad to Jessica told us, “Last September I took part in a charity golf day in loving memory of Jade. This was my second year playing and the score is Bentley Golf Club: 2 v R. Jaff a (H’cap 14): 0.Jade’s father John Wyatt is managing director of Seabrook Export Services Ltd and each year John and his colleagues, family and friends arrange a great golf day. John’s wife Lucy was there helping and supporting.We thought of Jade as we wore her favourite colour, pink. It was a warm day and everyone enjoyed the golf. After a good meal I spoke about Rett syndrome and the work of Rett UK. There was an auction of golf items and raffl e prizes were won. John and all golfers were very generous. Over £2,500 was raised to add to the already large donations from previous years.”Anyone wanting to participate in this year’s Annual Golf Day, on Friday 21st September 2018, is welcome.

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

FRIDAY21SEPTEMBER2018


SAVE THE DATE!Jade’s day will be held on Friday 21st September 2018 at Bentleys Golf Club, Ongar Road, Brentwood, Essex CM15 9SS. It will commence at 10.00am for breakfast and fi rst tee-off will be at 12.00. It’s normally £50.00, including bacon rolls and dinner/presentation.


With events coming up over the next few weeks and in 2018, good luck and thank you to our fundraising supporters.

ALEX SLACKAlex has several runs planned throughout 2018, inspired by his aunt Philippa, who recently celebrated her 55th birthday. Alex told us, “In December 2017, my lovely nana asked if I’d like to help to raise awareness of the good work that Rett UK does by taking part in one or two running events during 2018. Her daughter, my aunty Philippa, who recently celebrated her 55th birthday, suffers from Rett syndrome and the charity has been a great help to our family.I’m a keen runner and spent most of last year accompanying and running with my wife, as she ran thirty races in a year before she reached the age of 30, so I was happy with the idea of running a few races to promote Rett syndrome and the charity.By the time you read this, I’ll have completed my first race, a challenging half-marathon called the Steyning Stinger, along the top of the Downs. I have a few events planned between now and December, ranging from half-marathons, full marathons and one ‘ultra-marathon’. The aim is to run in as many as I can, so there is much training to be done. Fortunately, I live close to the South Downs and have many wonderful trails to explore. You can find out about the races that I’m undertaking, how the training is progressing and more at my website, with links to my donation page.”alexslack100.wixsite.com/run-for-rett

Alex

Alex Slack Philippa and her mum Jill

To our wonderful fundraisers...

GOOD LUCK


GOOD LUCK ALSO TO...Lauren Barcroft for her sister and her dad, Andrew Barcroft for his daughter, Carly. Both will take part in the 2018 Vitality London 10,000 on 28th May. They have also signed up for Hampton Court on 18th March 2018.www.justgiving.com/Lauren-BarcroftAndrewBarcroft.

Mark Gander is running the Brighton Marathon on 15th April for his daughter, Hanawww.justgiving.com/Mark-Gander4

Jodie Khurody chose Rett UK in honour of her friend’s niece and is also running the Brighton Marathon.www.justgiving.com/fundraising/jodie-khurody1

Alex Slack is running the Royal Parks Half Marathon for his aunt Phillipawww.justgiving.com/alexslack1 (see page 38)

Jill Taylor has committed to the Blenheim 7K Fun Run in honour of her step-daughter, Lilly.Mark Bieganowski we are delighted to have your support at the Leeds Half Marathonwww.justgiving.com/fundraising/mark-bieganowski

Thank You!

HELEN SMITHHelen Smith has tasked herself with fifty challenges (creative, musical, physical and/or embarrassing) before she reaches her 50th birthday, which is in 2019, in aid of Rett UK and in memory of her friend’s daughter, Alison. Helen responded, “While challenging myself creatively and physically, I am quite prepared to be exhausted and even humiliated for the benefit of a good cause. Karaoke has even been suggested! If you would like to challenge me, please send a message via my Facebook page.” www.facebook.com/pg/Helens-50-50-challengeTo-date, Helen has raised an impressive £3,737.00 + £483.50 of Gift Aid.uk.virginmoneygiving.com/SeamsmithHelen Smith


FundraisingBy Donna Tinch

Flex your muscles for Rett UK! Events in which you can become involved:

PARALLEL LONDON 2018Parallel London is the world’s first fully inclusive, accessible push-run for everyone. Disabled and non-disabled unite to run, walk, push or be pushed – anything goes! Take your place at the start line in the Olympic Park which welcomed the world’s finest Olympian and Paralympian athletes back at the London games. All ages. All abilities. No cut off times. No excuses!And that’s not all – there’ll be a family festival celebrating the very best in accessible attractions; from the fun and quirky to the ground-breaking and life-changing. Participate, volunteers or simply come along and show your support. Challenges include 100m, 1K, 5K and 10K so you can pick the race that best suits you.For more information or to register, please contact [email protected] or 01582 798 910.

We have places available for:

2018 Vitality London 10,000 Closing date for registration is 3rd May 2018

Royal Parks Half Marathon Closing date for registration is 18th August 2018


VIRGIN LONDON MARATHON 2018 Team Rett UKCongratulations to Hayley Griffiths, Michael Kavanagh, Sharon Slade and Tony Cox, who all secured places in the London Marathon 2018. If you’re travelling to London to watch it, let us know. We would appreciate the company to cheer on our wonderful supporters.

Hayley Griffiths was lucky to win the ballot for a Rett UK place. She commented, “My sister, Lynsey, was diagnosed with Rett syndrome at the age of 6. Sadly, she died in 1996 at the age of 18. It is, therefore, a great honour for me to have been selected to run in the London Marathon 2018 for Rett UK, a charity that means much to mine and my family’s hearts. Although I have been running for a couple of years, this will be one of the greatest challenges of my life. However, I know that the thoughts of Lynsey and this wonderful charity will carry me on the day.” uk.virginmoneygiving.com/HayleyGriffiths9

Michael Kavanagh first started running for Rett UK 15 years ago, in honour of Jerry Henderson, one of his best friends, whose daughter, Kerry, has Rett syndrome. Michael primarily used to do the British 10K runs and has more recently completed three half-marathons. His ambition has long been to run the London Marathon and he was lucky enough to secure a place this year and couldn't think of a more-worthy charity than Rett UK.www.justgiving.com/fundraising/a-kavanagh2

This is Sharon Slade’s third time running the London Marathon. Sharon told us, “For my 5th marathon I am returning to my favourite...London! I am very lucky to be able to do something I love for a young lady I love and for a charity I love.www.justgiving.com/fundraising/shazzaslade

Tony Cox explained, “I have been accepted to run the Marathon next April. As a non-runner, a smoker and drinker, this might be fun. I am doing this for myself and I have long-wanted to do it. I had the idea initially when I was a fit 15-year-old and not a rather unfit 42-year-old. If you would sponsor me, that would be wonderful. Many people have not heard of Rett syndrome and don’t know how terrible it is. I have a family friend who has been inspirational in dealing with the fact that his daughter has Rett syndrome and he has my utmost respect. I hope still to be alive and well after 26 miles but some of those with Rett syndrome now may not be so by April."www.uk.virginmoneygiving.com/cox-453205-yxs

Hayley Griffiths

Michael Kavanagh

Sharon and Lauren Slade

Tony Cox


Amazon ShoppingWe now partner AmazonSmile. You can shop with no extra cost to you and

we receive a small percentage of Amazon’s income.

What is AmazonSmile?AmazonSmile is a simple and automatic way for you to support Rett UK every time you shop, at no cost to you. When you shop at smile.amazon.co.uk, you’ll fi nd the exact same low prices, vast selection and convenient shopping experience as amazon.co.uk but with the added bonus that Amazon will donate a portion of the purchase price to us.

How do I shop at AmazonSmile?To shop at AmazonSmile, go to smile.amazon.co.uk from the web browser on your computer or mobile device. You may also want to add a bookmark to smile.amazon.co.uk, to make it even easier to return and continue your shopping at AmazonSmile.

Which products on AmazonSmile are eligible for charitable donations?Millions of products on AmazonSmile are eligible for donations by Amazon to charities. You will see eligible products marked Eligible for AmazonSmile donation on their product detail pages. Recurring Subscribe-and-Save purchases and subscription renewals are not currently eligible.

Can I use my existing Amazon.co.uk account on AmazonSmile?Yes. You use the same account on amazon.co.uk and AmazonSmile. Your shopping cart, ‘Wish List’, wedding or baby registry and other account settings are also the same.

How do I select a charitable organisation to support when shopping on AmazonSmile?On your fi rst visit to smile.amazon.co.uk, before you begin shopping, you select/search Rett UK to receive donations from eligible purchases. Amazon will remember your selection and thereafter every eligible purchase which you make at smile.amazon.co.uk will result in a donation.

EASY FUNDRAISING!


MIGHT YOU BE A RETT UK CHAMPION?

If you are inspired by our fabulous Rett Champions and want to help, please have a look at our events on pages 44 and 45. 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.

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

events you are planning.

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


If you are feeling motivated to support Rett UK, please contact the offi ce 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

MarathonsManchester Marathon 8 April 2018 Manchester

Paris Marathon 8 April 2018 Paris

Brighton Marathon 15 April 2018 Brighton

Milton Keynes Marathon 7 May 2018 Milton Keynes

Edinburgh Marathon 27 May 2018 Edinburgh

South Downs Trail MarathonTBC South Downs

Half MarathonsSheffi eld Half 8 April 2018 Sheffi eld

Milton Keynes Half 7 May 2018 Milton Keynes

Leeds Half 13 May 2018 Leeds

Virgin Sport Hackney 20 May 2018 Hackney

Edinburgh Half 27 May 2018 Edinburgh

South Downs Trail Half TBC South Downs

13.1KKilomathon 8 April 2018 Edinburgh

10KBrighton 10K 15 April 2018 Brighton

GEAR 10K 6 May 2018 East Anglia

Edinburgh 10K 26 May 2018 Edinburgh

Vitality London 10K 28 May 2018 London

Glasgow Men’s 10K 17 June 2018 Glasgow

Leeds 10K 8 July 2018 Leeds

Virgin Sport British 10K 8 July 2018 London

Burnley 10K TBC Burnley

Hull 10K TBC Hull

Nottingham 10K TBC Nottingham

6.5KKilomathon 6.5K 8 April 2018 Edinburgh

5KEdinburgh 5K 26 May 2018 Edinburgh

Are you up for a

challenge?


2.62KKilomathon 2.62K 8 April 2018 Edinburgh

Obstacle Race/Fun RunThe Gauntlet Games: Brighton 5K & 10K14 July 2018 Brighton

The Gauntlet Games: Cardiff 5K & 10K21 July 2018 Cardiff

The Gauntlet Games: London 5K & 10KTBC London

Obstacle RaceSpartan Super: London 12-16K7 April 2018 South East London

Spartan Sprint: London 5-6K 8 April 2018 South East London

Rough Runner: The South14-15 April Hampshire

Rough Runner: Oxfordshire19-20 May Oxford

Spartan Super: Gloucester 12-16K 23 June 2018 Ashton Down

Spartan Sprint: Gloucester 5-6K24 June 2018 Ashton Down

Spartan Beast: Edinburgh 19-22KTBC Edinburgh

Spartan Sprint: Edinburgh 5-6K TBC Edinburgh

Toughest: London South 8K TBC West Sussex

TriathlonLondon Triathlon TBC London

RECYCLE FOR RETT!

Do you any have empty ink cartridges which could be recycled?

We can send you a Freepost envelope from our partner, Recycle 4 Charity and we will receive back a percentage of income. It’s a simple and eff ective way to help us and make good use of surplus empty

ink cartridges. Email us at [email protected].

You don’t have a printer at home but your employer or the school which your child attends does?

For larger toners and ink cartridges, we use a sister company, Zero Waste

Recycling. You can pack them in a box to be collected or post it to

them. To have your box collected, they charge a fee.

To organise a collection or delivery please visit

www.zerowasterecycling.co.uk and from there you can select which option you prefer. They ask that you to remove any packaging and include

in the box only the cartridges.

www.recycle4charity.co.uk/Register/C2193

Happy recycling!


The 200 Club was established by Yvonne Oliver in 1996 to hold monthly prize draws and at the same time raise funds for Rett UK. In 2008, it became a 300 Club. Since 1996, prize monies of more than £20,000 have been won and we have raised over £32,000 for the charity.There are 11 monthly prizes of £30, £20 and £10 and if we have a full membership of 300, at the AGM, top prizes will be drawn for the month of October, of at least £325, £225 and £125. Top prizes will vary, depending on membership numbers.Membership is open to members of Rett UK, their relatives, friends and supporters. Each share costs £12.00 for the year and you may buy a maximum of 10 shares. A number will be allocated for each share that you buy and all numbers are entered into the monthly prize draws. Approximately 50% of the income each year will be paid out in prizes and the balance will go into Rett UK funds.The prize draws are made quarterly at meetings of the Executive Committee of Rett UK and winning numbers and names will be published in Rett News; you will receive a letter and cheque if your number wins a prize. Please support us by buying one share (or more!).

300 Club Results

Well done to all those whose numbers were pulled

out of the velvet bag!

The winners are:

NOVEMBER 20171ST PRIZE £30 No: 86 Abigail Langdown

2ND PRIZE £20 No: 51 Andrew Slugocki

3RD PRIZE £10 No: 235 June Reed

DECEMBER 20171ST PRIZE £30 No: 256 Vicky de Leval

2ND PRIZE £20 No: 271 Angela Duncan

3RD PRIZE £10 No: 149 Elizabeth Antonakopoulos

JOIN NOW!If you would like to join

our 300 Club and receive the full benefit 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.

RETT UK

JOIN NOW!Think of this as a

lucky chance for you and an opportunity

to raise funds for Rett UK


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 or Sashika Selvackadunco on 020 7848 0290. If it is out of usual working hours, please leave a message and a member of the team will

contact you as soon as possible.

Post-mortem examinations can take place up to 72 hours after the person’s death.

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

Welcome toMichelle PrendergastWe are delighted to welcome to Michelle Prendergast, who has joined us a fundraising support offi cer, based in the offi ce, one day a week. “Hello. My name is Michelle and I’m mummy to three beautiful girls, Daisy aged 12, Summer aged 10 and Cerys, aged 7. My husband, James and I received Cerys's diagnosis of Rett syndrome two years ago, after fi rst being told that she had Global Development Delay and then autism. We were devastated and went through a grieving process. We now try to focus on the positive aspects of Rett syndrome and on making our family life as normal as possible for Daisy and Summer. Over time, my family has meet some wonderful people who now are close friends. Since Cerys’ diagnosis, I discovered a great enthusiasm for fundraising and hope to continue not only to raise funds for Rett UK but also to educate and spread awareness of Rett syndrome. I organised the Rett UK Masquerade Ball in October 2017 and thoroughly enjoyed the experience, engaging with the community and increasing recognition of Rett syndrome. The evening was a phenomenal success and I was pleased to have helped the charity to raise £10,000. I am delighted and excited to take up this fundraising support opportunity with Rett UK. I take the view, ‘to achieve is to believe and I do believe that together we can make a better future for our families living with Rett syndrome’.”


Cover image: Daisy Gilbert, Ieuan Burgess (aged 1), Cerys Prendergast, Emily Kitson

Rett NewsSupport today, hope for tomorrow

www.rettuk.org

issue: four/2017

IN THIS ISSUE

European Rett Syndrome Congress 2017

Communication and Education

CHC Assessments and Appeals

IMPORTANT! Data Protection Update

Family 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.

Membership for Adults with Rett SyndromeWe have been reviewing the information currently received by our members and have recognised that it is very valuable for support staff and paid carers, particularly those living within residential care or supported living environment and not just our family/carers.To ensure that information is shared with these workers and anyone else who may fi nd the information useful, we have introduced a membership for adults with Rett syndrome.This new membership will ensure that individuals will receive copies of Rett News on a quarterly basis and their own copy of the Family Companion, which will be available for their support staff to read.If your daughter/son has recently moved into either a residential care home or support living service, please contact us so that we can activate their membership.

If you would wish to have further information regarding the membership, please contact a member of the Family Support Team, who will be able to help.

Email [email protected] or call 01582 798 911.

BECOME A MEMBER

OF RETT UK


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

Address:

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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.

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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 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] • www.rettuk.org

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 2018

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€¦ · rett news · issue one/2018 · page 2 help support us to help support you...

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