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EDITION 116 SUMMER 2018

Read it and sleep Top tips for getting a good night’s rest

Summer’s here! How to make the most of the longer, warmer days

Plus: Photos from Outlook | SMC decision on everolimus for epilepsy The TSA BIG DAY is coming - Early booking advised to avoid disappointment


Tuberous Sclerosis Association 3 TSA Update

What’s inside Issue 16 Summer 2018

The launch of a new strategy, a small but important ask and messages from our Chair Martin and CEO Maxine

TSCare 6 The big sleep Sleep is vital but many of us don’t get enough, so we look at how you can improve it, as well as the specific challenges for people living with TSC

12 Summertime fun If you’re affected by TSC, summer can be a challenge. Here we offer some helpful advice so you can enjoy it – from tips on booking holidays and days out to accessible transport and loos

TSCampaign 18 Everolimus latest Read all about the Scottish Medicines Council decision on everolimus for TSCrelated refractory epilepsy. And, ever wondered what a CPAG is? If so, you can find out more here.

TSCure 19 Research round up Did you know the TSA was doing all this?

20 Life-changing research Kacper Rogala from the Whitehead Institute in Boston talks about his research on mTOR inhibitors and how this could improve the lives of people with TSC

TSCommunity 22 Outlook Event round up

26 In your region Useful information specifically for our TSC communities in England, Northern Ireland, Scotland and Wales

30 Get involved Volunteering, Fundraising and Campaigning for the TSA

34 Remembering our supporters We make a big shout out to our super fundraisers and give thanks for the lives of absent friends

Summer 2018

@UKTSA facebook.com/tsauk

W www.tuberous-sclerosis.org youtube.com/tsauk instagram.com/tsauk Useful contacts

We take a look at our most successful Outlook event ever!

Head office CAN Mezzanine, 32-36 Loman Street, Southwark, London SE1 0EH T: 020 7922 7731 E: admin@tuberous-sclerosis.org

24 TSA events Find out exactly why you should book your place now to come to our TSA Big Day in Sheffield this November.

SCAN Editor and TSA Communications Sarah Roberts T: 07870 210308 E: sarah.roberts@tuberous-sclerosis.org Donations, Fundraising and Events Kathryn Harrison and Tanya Darnton T: 07922 838960 and 07923 412234 E: fundraising@tuberous-sclerosis.org

Opinions expressed in articles do not necessarily express the official policy of the Tuberous Sclerosis Association.

Tuberous Sclerosis Association is a Company Limited by Guarantee Registered in England and Wales No. 2900107. English Registered Charity Number. 1039549 Scottish Registered Charity No. SC042780 Registered Office: CAN Mezzanine, 32-36 Loman Street, Southwark, London. SE1 0EH

Dear SCAN Readers A warm welcome to you all to this Summer 2018 edition of Scan. I hope you like the new, simpler, fresher look. I also hope you find the content useful and above all interesting! A huge thank you to everyone who has contributed to this edition, whether you’ve taken part in our poll on sleep, been interviewed, photographed, written something, or just contacted me with feedback. It is all, as they say, grist to the mill! And now for a very simple message which has nothing to do with SCAN. If you support the TSA and the work we do and want to stay in touch, then please go to our website www.tuberous-sclerosis.org/register give us your details and tick the consent box to say that you are happy for us to communicate with you by email. And could we ask you to please encourage as many of your family, friends, colleagues and neighbours to do the same – anyone, in fact, who has an interest in TSC and would like to stay informed or help us with our work in any way. The new data protection laws now in force mean that if you don’t tick the consent box, we won’t be able to email you our newsletters any more, however many years we might have been doing so! We really don’t want to have to say goodbye!

tuberous-sclerosis.org

Information correct at time of going to press.

0

Social

“to provide help for today and a cure for tomorrow”

So thanks for reading – please get registering and ticking (there’s more about this on page 5 too) – and above all, have a good summer. Sarah Roberts Editor TSA SCAN

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Sleep on it Apparently, a giraffe needs less than two hours of sleep a day, a cat spends two thirds of its life asleep and lucky humans spend a third of their life sleeping. I say lucky humans because there are many who, for various reasons, do not manage to sleep that well. Sleep is vital. It is the time when our brains process the information we have received unconsciously during the day, and keeping our conscious and unconscious worlds aligned is one of sleep’s most important functions. Knowing this, I will always want to sleep on significant issues and decisions to give the unconscious a chance to surface before I take any action. A good night’s rest has so many benefits that this issue of SCAN comes with ideas and suggestions to help us sleep more like cats than giraffes. I hope you will find it useful. With my best wishes, Martin Short TSA Chairman

Summer survival tips It’s some years since my sons were at school, but I can still recall feeling like a deer in the headlights at the thought of the school summer holidays. Ok, the first few days are fun, never quite making it out of pyjamas, but then reality kicks in. When they’ve eaten everything , boredom has set in and energy levels are rising, you wonder why you haven’t developed a survival strategy. While it’s easy to joke, summer holidays can be a significant challenge, particularly if you have a family member living with TSC. As many of you know, numerous adult services are reduced during the summer, routine activities are disrupted and finances are challenged as we try to fill our days. But help is at hand with this edition of SCAN. We hope it will provide you with the information you need to enjoy getting out and about. We have tips on places to visit, accessible transport, toilets and changing facilities, as well as holiday planning and how to make your money go that little bit further. And please remember, our TSA Regional Advisers are at the other end of the phone if you need any help. Wishing you a great summer, Maxine Smeaton 4

Summer 2018

A new focus on strategy The TSA Board are currently developing a re-focused strategy which expresses our vision, aims and objectives for the years ahead. The four core TSC themes will continue to describe the ways in which our Association aims to make life better for people with TSC and those who support them. As many of you will be aware, we have been consulting with members of our community as part of our strategy review. We’ve talked to people affected by TSC, their families and carers, and also the professionals who support them, including clinicians and scientists. We feel satisfied that we have listened to all the feedback and now have an updated understanding of what our community needs from us. The result of these conversations is being distilled as SCAN goes to press but it is clear that you have found our four core themes helpful and we are using them to shape this issue of SCAN. You will find sections looking at TSCare, TSCampaign, TSCure and TSCommunity. Please let us know if you like this layout. In parallel with finalising the strategy, we are also looking at how we can fund and deliver our new agreed priorities. After a number of years of running deficit budgets, we now need to balance the books in a way that secures the long term future of the organisation. Are there ways we can be more efficient through the use of digital applications, encourage more interaction and attract new audiences? Are there ways we can partner with other organisations to deliver more? And how can we develop a fundraising strategy that ensures everything we do is sustainable? We hope that in November at the BIG DAY (see page 21), we will be able to provide you with far more detail about our plans for the next five years. For now, thank you for all that you do to support our efforts to grow and develop the TSA.

Your chance to tell us how you would like us to keep in touch with you. New GDPR data protection regulations introduced in May mean you need to give us your permission for us to stay in touch with you by email and telephone. As a valued member of our community, we want to make sure you are up to date with all things TSC. Whether you are interested in the NHS funding of everolimus, opportunities to take part in research or running next year’s London Marathon, we need your consent to let you know about them. You can give this by logging on to our website, if you are already registered. Or if you’re not, just fill out the quick and easy form under the register tab at the top of the home page. Please take five minutes to do this. We really don’t want to lose touch. You are our community and we need you! Thank you to all of you who have already done this fantastic! We really appreciate your ongoing support.

The TSA is changing the way it works

It wants to make life better for people with TSC TSA SCAN

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TSCare

TSCare

“We don’t get much sleep!” Jo Dale explains that’s just how it is for her and her son, Sam (10), who has TSC “Sam’s now 10 and had his first seizure at four months old. There is no pattern to his sleep, other than that he’s usually up by 4am. Some nights, despite being tired, he’ll go all night without sleeping because he just can’t drop off. He often bangs his head against things, so to protect him he sleeps on a large mattress on his bedroom floor in a ‘safe space’ – a big cube tent. I sleep with him, as he can’t settle or sleep on his own. As long as I get three to four hours’ sleep a night I can cope.

Sleep issues

For the past year, Sam’s been going into respite care overnight every Thursday. That’s made a huge difference to us. If I could offer other people any advice, it would be to get a social worker who will work hard to get respite care for you and your child. But don’t assume that sleeplessness is a result of TSC. There could be many reasons behind it.

Sleep plays a crucial role in keeping us fit and healthy. Among many things, it can affect our concentration and productivity, our physical ability and mental stability, and how good we feel. But many of us aren’t getting enough, particularly those affected by TSC.

Do all the sleep courses, try melatonin and the ketogenic diet. But most importantly, look after yourself. I cope by spending time with friends when I can and doing things for myself when Sam is at school or in respite care.” Read more of Jo’s story at www.tuberous-sclerosis.org/tsablog

We look at why and what we can do about it…

Sometimes, people with TSC find it harder to sleep than other people 6

Summer 2018

What you told us about TSC and sleep

63%

Only 63% of people told us they had ever sought help for sleep problems

75%

A huge 75% of people with TSC said they have a problem getting enough sleep or getting good quality sleep

95%

A whopping 95% of carers of someone with TSC told us they, or the person they care for, struggle with their sleep

TSA SCAN

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TSCare

TSCare

How to get to sleep Tired of struggling to get your child to sleep? Vicki Dawson, CEO of The Children's Sleep Charity, offers some tips on helping them doze off. Sleep problems are extremely common in childhood but The Children’s Sleep Charity is helping families to get a better night’s sleep. Through introducing small behavioural changes, the charity sees a 90% success rate in improving sleep patterns. If you’re struggling, you could try some of these suggestions: • Stick to a routine: Routine helps our body clocks to stay on track, so decide on a realistic bedtime and if your child isn’t falling asleep until late, try moving bedtime back by 15 minutes every three nights. Consistency is important too, so develop a routine that begins 60 minutes before bed and do this every evening. Wake up times should also be the same every day, even at the weekend. • Wind down with games: Fine motor skill activities, such as jigsaws, threading activities and model making, can help promote relaxation and make ideal pre-bedtime choices. Put suitable items in a box and bring it out in the hour before bed. • Introduce screen-free time: Avoid televisions, mobile phones and computer activities in this hour. It will help your child to produce melatonin, the sleep hormone that makes them feel drowsy. • Give them snoozy food: Food packed with calcium, like yoghurt and cheese, makes a great suppertime snack. Swap caffeinated drinks, like cola, for water and keep an eye on sugar levels too. • Let the outside in: Spending time in natural daylight can keep our body clocks in sync, so open the curtains each morning and, if possible, encourage your child to go outdoors. To find out more, go to www.thechildrenssleepcharity.org.uk

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Summer 2018

Your sleep is what you eat Did you realise that what you are eating might be affecting your sleep? Our Head of Support and Information Services, Clare Kassa, offers some pointers As well as having an enormous effect on our wellbeing and how we cope with stress, what we eat can also influence our sleep. If you’re struggling to get a good night’s rest, you could try adding some of these sleep-inducing foods into your diet: • Anything that’s high in calcium and magnesium. Calcium helps you convert tryptophan (an amino acid) into melatonin, while magnesium helps regulate it. Trytophan is found in yogurt, milk, cheese, oats, bananas,

Sleep has often been a problem for Jackie Murray (29) from Stirlingshire, who was diagnosed with TSC at 12. But she’s recently made some changes that have improved her sleep

poultry, eggs, peanuts and tuna. There is magnesium in spinach, bananas, nut, seeds, fish and wholegrains. • A carbohydrate-rich snack in the evening, such as a bowl of cereal or a few oatcakes an hour before going to bed. • Herbal teas, such as camomile or valerian. Or some brands now offer a special bedtime brew. And, if you can, avoid these: • Caffeinated drinks like tea and coffee. • Too much alcohol. It may help you fall asleep but means you are more likely to wake up in the middle of the night. • Sugar. It can be a stressor on the body and cause sleep issues.

I’m cutting down on chips There are things you can do to help you sleep better.

You can change what you eat and spend time outdoors.

“I have tumours on my brain, lesions on my skin and nodules on both my kidneys. I don’t have seizures but I struggle with numbers and suffer from social anxiety. I am a big worrier, plus I am not able to work, so I don’t have a set daily routine. All this has made it difficult for me to sleep at times. Recently, I have made changes to my lifestyle that have helped me to sleep better. I’ve started drinking herbal and fruit teas, especially camomile tea, choosing healthier food options and trying out new recipes. I’m cutting down on chips and eating more rice instead, and eating much more fruit and veg. I’ve been walking in the fresh air every day and singing, in a choir and on my own, as often as possible. It’s something I really enjoy and am good at, plus it takes me out of myself and makes me forget all my problems. At bedtime, I try to wind down with a book or some TV with my two cats Belle and Ginni. I put lavender oil on my pillows and use a nightlight, as I don’t like the dark.” TSA SCAN

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TSCare

Getting to the point

Acupuncture is a deeply relaxing treatment that could help you sleep, explains Rebecca Bond of Riverside Acupuncture in West Sussex

Good quality sleep is important as it allows your body to regenerate, repairing DNA and flushing away toxins. A lack of it can affect your learning, mood and memory, and can increase your blood pressure, among other impacts. If you struggle to get enough sleep, you might want to consider the ancient traditional Chinese therapy of acupuncture. Through inserting thin stainless steel needles into specific points in the body, it has been proven to be effective in improving and maintaining overall wellbeing. It can also help with many specific conditions, as outlined by NICE guidelines and the World Health Organisation, including pain, depression, migraines, tension headaches and arthritis.

So you can go about changing things. To download a diary, go to www.nhs.uk/livewell/insomnia/documents/sleepdiary.pdf

10 Summer 2018

Scientists are always trying to find out more about what affects our sleep, but here we look at the research into the links with TSC and epilepsy Professor Deb Pal

Recent research has shown that children with TSC are at a higher risk of sleep problems, such as trouble falling and staying asleep, than typically developing children. These sleep difficulties were associated with painful health conditions, so it is essential that physical health problems are assessed when sleep difficulties are identified in children with TSC. Those were the findings of a study led by Dr Caroline Richards and Professor Chris Oliver at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham. Read the full paper at goo.gl/6Vc9SY Or a blog summary at goo.gl/AiQZ3P Download Cerebra’s support guide for parents at goo.gl/jvmCUo

To find a qualified acupuncturist, call the British Acupuncture Council on 020 8735 0400 or go to www.acupuncture.org.uk

Keeping track of your sleep, as well as your diet, habits and activities, could help you discover what’s keeping you awake.

The science behind sleep

The science behind sleep

Acupuncture is a deeply relaxing treatment that aims to tackle the root of the problem rather than just managing symptoms. The goal of treatment is to restore the imbalances within the body, so that you feel vibrant and energetic. One of the great side effects of acupuncture is improved sleep, with patients finding that they are sleeping longer and deeper, and waking less. Patients wake up feeling refreshed and with more energy, and drop off to sleep more easily.

Keep a diary

Scientists are trying to find out why people with TSC have sleep problems

TSCare

TSA Adviser training as sleep practitioner

If you are struggling to get onto the internet to print a copy give your TSA Adviser a ring and they will help you with this

We are very pleased to be able to tell you that our TSA Adviser Kendra Rhodehouse is, very soon, going to undergo training with the Children's Sleep Charity to become our first specialist Sleep Practitioner.

Watch this space!

Sleep and epilepsy Epilepsy and sleep are tightly related and there is a vicious cycle where anything that causes sleep disturbance or fragmentation can further trigger seizures. This includes sleep disorders, anticonvulsants or seizures themselves. A new study programme is looking into this link. The Changing Agendas on Sleep, Treatment and Learning in Childhood Epilepsy (CASTLE) project is underway. It is being led by Professor Deb Pal at Kings College London and Professor Paul Gringras at Evelina London Children’s Hospital, with a large team of clinical and scientific experts, as well as parents and young people. This study has been funded by the National Institute for Health Research for the next six years. It is focusing on a particular type of epilepsy called rolandic epilepsy, which is the most common type, affecting about one-sixth of all children with epilepsy in the UK. CASTLE need parents’help. They’d like to know what you think they should include in their online sleep intervention so they can tailor it for parents of children with epilepsy. They’ll then ask parents what they think about it and whether it might work. To find out more or register to take part, go to castlestudy.org.uk

TSA SCAN 11


TSCare

The sun’s finally here and it should be time to get out and enjoy it.

It’s summertime!

But, whether you fancy a day out with the family or are craving a long break in the sun, it’s not always that easy if you have a disability or health condition. Never fear though, as we’ve got some ideas to help you make the most of the longer days and (hopefully) better weather…

Great days out Euan’s Guide So, there’s somewhere you’d like to visit, but you’ve no idea how accessible it is or what the toilet facilities are like? Or, perhaps you’re absolutely stuck for ideas when it comes to days out or a break from your routine? Well, don’t worry – we’ve got some pointers for you… Take a look at Euan’s Guide. This disabled access review website aims to“remove the fear of the unknown”and inspire people to try new places. The site includes hundreds of attractions and venues that have been reviewed by disabled people according to their accessibility. It also has great search functionality, allowing you to look for types of days out (attractions, socialising, activities, accommodation, events and other places), as well as by accessibility features, including audio description, Braille, sign language, disabled access, easy read, induction loop and disabled parking. There are also some great articles, including the recent top accessible city breaks in the UK. To find out more, go to www.euansguide.com 12 Summer 2018

Merlin Annual Pass Merlin operates some of the UK’s most popular attractions, including Alton Towers, Blackpool Tower, Legoland Windsor, Madame Tussauds, Sea Life Centres, Thorpe Park and Warwick Castle. Instead of paying per visit, you might like to consider buying a Merlin Annual Pass, which will secure an adult or child 12 months of unlimited entries to Merlin attractions. The cheapest will cost £139 per person, if bought as a family of three package (total £417), rising to £179 individually. You only have to make eight visits in one year and you will start to save. If you are a disabled adult or child you can get a complimentary carer’s pass from Merlin, which is transferable between carers. To find out more, go to www.merlinannualpass.co.uk/information/disable d-passholders or read Magical days out in our Money section on page 16.

TSCare

Sometimes days out can be difficult for people with TSC There are guides and passes to help

Access for everyone at National Trust The National Trust is also well worth a look. It runs more than 500 properties and attractions across the UK, with a whole host of seasonal events. Plus, it has not one but two schemes to help make your visit more affordable and enjoyable if you have a disability. Firstly, there’s a Links Pass, which gives half-price entry to groups affiliated with disability charities, day centres or registered care homes. Carers or companions with the group are welcome free of charge. Sedondly, if you are not visiting as part of a group, the National Trust also offers its Essential Companion card. This enables disabled people to bring one or two carers or companions, free of charge, when you show the card. To find out more, call 0344 800 1895, email enquiries@nationaltrust.org.uk or write to National Trust, PO Box 574, Manvers, Rotherham, S63 3FH Or National Trust Scotland at National Trust for Scotland Hermiston Quay 5 Cultins Road Edinburgh EH11 4DF Tel: 0131 458 0200

The walled garden at Buscot Park House in Oxfordshire

TSA SCAN 13


TSCare Summer

TSCare Sum

It’s showtime ! Sometimes you might not have the energy for a full day out but you’re looking for somewhere local to go for a couple of hours of escapism. That’s where the cinema and theatre come in – but what if you or your companion finds the usual format of such venues a bit too much? Never fear, because there are still options open to you…

Autism-friendly cinema DimensionsUK works with ODEON, Cineworld, Vue and Showcase to host autism friendly screenings of films at over 300 cinemas nationwide.

There are cinemas, theatres and activities for people with autism or a learning disability There are guides to help you plan a holiday

Relaxed theatre performances

Films, suitable for all ages, are usually shown on Sunday mornings in a relaxed environment. The lights are left on low, sound is turned down, there are no trailers or adverts and you have the freedom to move around if you wish. You can bring your own food and drink and some cinemas even have a chill out zone. All venues offer disabled access and have specially trained staff available. To find out more, go to www.dimensions-uk.org

If the theatre is more your thing, then the National Autistic Society (NAS) has just what you need. It provides a guide to forthcoming autism friendly and relaxed performances of popular stage shows. The NAS has lots of other information about autism friendly holidays and days out on its website too. To find out more, go to www.autism.org.uk/about/family-life/holidaystrips/performances.aspx or call the NAS helpline on 0808 800 4104

Sun safety a little reminder People with facial angiofibromas should use sunscreen with a minimum factor of 30 to help protect their skin. 14 Summer 2018

Get active ! Perhaps you fancy more of a challenge or an opportunity to meet new people, with a reward at the end? Then Mencap’s Gateway Award scheme might be just what you’re looking for…

The Gateway Award The Gateway Award is an activity award scheme for people with a learning disability. It encourages you to gain new skills and experiences, become more independent, make friends, be active in the community and improve your health and wellbeing. There are three levels to the Gateway Award: Bronze, Silver and Gold. Each has five different activities and participants will receive a certificate upon completion of each stage. Whatever your age or ability, you can take part at Gateway award centres across the UK. You’re free to choose your own level and work towards the award at your own pace. To find out more, go to www.mencap.org.uk or call 020 7454 0454

TSA Holiday Factsheet The TSA also produces its own free holiday factsheet. To download the 2018 edition, go to www.tuberous-sclerosis.org

Let’s all go on a summer holiday There’s often nothing better than a holiday. Whether you fancy a week away in the UK or a longer break abroad, there are some great resources to help you to plan every aspect of your trip – from where to go, how to get there, what to do and more practical considerations like travel insurance…

Hft’s Holiday Information Guide HfT publishes a well-respected holiday guide every year for people with a learning disability, their families and carers. It includes useful information on places to stay in the UK and abroad, as well as tour operators and specific interest holidays. There is also advice on a range of holiday-related subjects, including the Family Carer Support Service, funding and grants, and insurance, in addition to resources specifically for family carers and information about Hft. Hft’s Holiday Information Guide 2018 guide is available now. To download it, go to www.hft.org.uk or to request a copy on the post, send an A4 stamped addressed envelope with £1.40 worth of stamps on it to Holiday information guide, Hft, Family Carer Support Service, Whitefriars, Lewins Mead, Bristol BS1 2NT TSA SCAN 15


Money, money, money Max Card The Max card is a discount card for families of children with additional needs. By showing it on entry to more than 800 attractions and events throughout the UK, including castles, zoos and bowling alleys, you can get a discount on the admission price. Max Cards are available from participating local authorities and selected charities and cost around £2.50 for a year. To find out more, go to www.mymaxcard.co.uk

CEA Card The CEA card is produced by the Cinema Exhibitors Association. It allows a person with disabilities, aged eight years old and over, to take a carer or support worker to the cinema with them for free. Cards last a year and cost £6. To find out more or apply, go to www.ceacard.co.uk

While some of the best things about summer holidays are free – making memories with loved ones, the sun on your face, the wind in your hair and the sound of the sea – many other enjoyable activities do come at a cost. However, we’ve found some ways you may be able to save on your summertime fun…

Magical days out Merlin’s Magic Wand offers magical days out to families with a child with disabilities. The charity provides tickets and sometimes travel grants for a trip to a Merlin Entertainments Attraction in the UK. However, families will only be awarded one day out and you need to allow at least eight weeks for your application to be considered. To find out more and apply, go to www.merlinsmagicwand.org or call 01202 440060

accessible transport Getting there Mencap’s There is a fantastic section on the Transport can be a big stumbling block for people with a learning disability and families with a disabled child during the summer. Accessible transport is vital to be able to enjoy it, so here are some resources that could really help…

Mencap website about accessible transport. It covers public transport and what to do if you have problems using it, and your rights to support on all forms of transport. There is also information on subsidised transport, including the Disabled Person’s Railcard, the Blue Badge Scheme, Motability and free bus passes, and details of local transport initiatives run by groups in specific areas across the UK. All this information is available in easy read format. To find out more, go to goo.gl/N1WrDv or call 0808 808 1111

16 Summer 2018

Toilet Talk Being able to go to the toilet in a clean and safe environment is fundamental to everyone’s health and wellbeing, but if you have a disability it’s not always possible when you’re out and about. Luckily, there are some great organisations offering facilities that give people with a disability the freedom to enjoy their summer…

Mobiloos Mobiloo vehicles are mobile, accessible toilets and changing places, currently available to hire in the UK and Ireland. The non-profit social enterprise says it has plans to expand to other countries soon. You can also hire Mobiloos for public events and venues, organised activities or private functions. Mobiloos will come with an attendant/driver who will set up your Mobiloo, supervise its use, keep it clean and ensure a hassle-free experience for users and hirers. To find out more, go to www.mobiloo.org.uk or to book a mobiloo call 0300 030 1255 or email info@mobiloo.org.uk

Contact’s guide for parents Contact has a very good guide for parents on access to transport for disabled people. It covers England, Northern Ireland, Wales and Scotland. To download, it go to www.contact.org.uk and choose‘Holidays, Play and Leisure’or call 0808 808 3555

Radar Keys The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country, with Radar Keys. Toilets fitted with NKS locks can be found in shopping centres, pubs, cafes, department stores, bus and train stations and many other locations. You can buy Radar Keys from Disability Rights UK at a cost of £4.50 including VAT. They are also available from some local disability organisations. To find out more, go to www.disabilityrightsuk.org/shop

Changing Places Standard accessible toilets do not meet the needs of everyone with a disability. People with profound and multiple learning disabilities, as well as those with other physical disabilities, such as spinal injuries, muscular dystrophy and multiple sclerosis, often need extra equipment and space. Changing Places toilets offer exactly that. There are currently 1,099 Changing Places toilets throughout the UK. If you are planning to travel outside your local area then the interactive Changing Places map can show you all the Changing Places toilet locations along your There are cards route. If this is a regular that give you trip, you can also save money off so day your route to your trips are cheaper. favourites tab. To find out more and locate a toilet, go to www.changingplaces.org

Accessible transport and toilets make going out easier.

TSA SCAN 17


TSCampaign

Landmark decision as everolimus for refractory epilepsy in people with TSC is accepted for use in Scotland As the everolimus debate continues for TSC patients, the TSA is making sure your voices are being heard

TSA Research Did you know? The 2018 Award Round ran during last year. We received 9 applications and funded 3 new projects.

We are delighted to tell you that the Scottish Medicines Consortium (SMC) announced on Monday June 11 that everolimus will be available on prescription to treat TSC related refractory epilepsy in people aged two years and older with Tuberous Sclerosis Complex (TSC) in Scotland. Our CEO Maxine Smeaton said:“We are absolutely delighted with this announcement. This decision will have a tremendous impact on the physical and mental health of people living with TSC-related refractory epilepsy in Scotland, as well as improving the quality of life for their families and carers.” Maxine added:“We are grateful to SMC for providing the TSA with the opportunity to speak directly to the decision-making panel along with our patient representative, Craig Ireland. His first hand experience was key to helping the SMC make an informed decision about the benefits of taking everolimus for TSC related refactory epilepsy.”Father-of-one Craig, from Falkirk, represented Scotland’s TSC community at an SMC hearing in Glasgow last month. Dr Chris Kingswood, TSA Trustee stated:“This is fantastic news and a game-changing landmark in the treatment of TSC. The TSA will now develop a plan to support the NHS to Craig Ireland ensure all patients who need everolimus, have access and can be safely monitored.” Dr Kingswood is a consultant nephrologist who chairs the TSC’s research committee. Jill Booth, Area Drug and Therapeutics Committees Clinical Adviser for the Scottish Medicines Consortium, said:“We would like to thank the TSA for the time and effort taken to produce your submission and also for your participation in the PACE (Patient and clinical engagement) process. Capturing the views and experiences of patients and carers is an important part of the SMC process and plays a key role in helping our committee reach its decisions. We hope that your patient group will welcome this decision.”The TSA is also contributing to work underway by NHS England in a bid to secure everolimus available on prescription for people with TSC related refractory epilepsy in England. A decision by NHS England’s Clinical Priorities Advisory Group (CPAG) is expected in the next few weeks.“We are looking forward to what we hope will be a similarly positive decision about everolimus by NHS England,”said Maxine Smeaton.

How does the CPAG work? The CPAG makes recommendations on NHS England’s approach to commissioning services, treatments and technologies, and considers which of these should be prioritised for investment. Its scope includes all specialised services provided by NHS England. The advisory group assesses drugs, medical devices and treatments according to their clinical effectiveness, benefit for patients and value for money. It considers recommendations from clinical reference groups (CRGs) and teams covering NHS England’s specialised commissioning James Palmer, Medical Director for responsibilities and takes into account detailed information Specialised Services, NHS England about the financial impact.

TSCampaign

Some of the things happening in TSC Research, led by the TSA…..

Our current research portfolio includes 15 live and ongoing research projects.

In 2017, our funded work was profiled at a number of conferences and meetings. There were 17 oral presentations and 8 academic posters. We are increasing our numbers of both lay and professional members on our Research Committee (RESCOM). In 2017 our funded work led to the publication of 9 papers in academic journals with more to come in 2018 We are looking at new ways to use patient data by reviewing clinical registries and other technologies.

We are shortly to publish our refreshed Research Strategy. This will outline our key priorities for research and detail how we deliver these over the next 5 years.

We are funding two members of the UK TSC Community to attend the 2018 TS Alliance World Conference.

Through your support we will have contributed £2.4 million to TSC research between 2011-2020.

TSA Research contacts Head of Research

Research Grants and Evidence Assistant

Alison Cooper

Bethan Vaughan

Tel: 01256 895 183 alison.cooper@tuberous-sclerosis.org

Tel: 020 7922 7731 bethan.vaughan@tuberous-sclerosis.org

To find out more about the CPAG process watch this video youtu.be/b1exxrBDUEU 18 Summer 2018

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TSCure Research

The next-generation of drugs The TSA is funding new research to create a nextgeneration drug that could improve the lives of people with TSC. We caught up with Kacper Rogala of the Whitehead Institute in Boston, USA, who is carrying out the work.

Can you give us a summary of your work? My work is concerned with structural biology and drug discovery. These two disciplines are very closely linked and together they can make a real impact for TSC patients. The full title of my research project is Towards specific mTORC1 inhibitors capable of rescuing TSC loss-of-function.

What do you do outside of the lab? I absolutely love playing handball as a goalkeeper. The ball is often thrown at you from five to nine metres, with speeds exceeding 60mph. Cat-like instincts and next-level agility are a must if you want to do well in this game.

What issues are you trying to solve for TSC patients? Protein affected by genetic mutations in TSC patients is unable to regulate mTOR, so the growth in cells impacted by those mutations is completely out of control. We have drugs on the market that can curb the activity of mTOR, but there are two classes of mTOR in cells and those drugs hit both of those. So, when you take drugs such as rapamycin over long periods of time, you potentially fix the abnormal growth problems of those cells, but also affect useful processes controlled by the other class of mTOR molecules, including the balance of sugar levels. This, of course, is not ideal, because it increases your risk of developing other disorders, including diabetes.

How are you trying to rectify this? Work from our lab, and from others around the globe, has revealed the differences between the two mTOR classes. Having this knowledge, it is now possible to work towards creating medicines that will act only on the mTOR class involved in TSC and not on the other. We want to be able to develop a next-generation drug that alleviates all symptoms of TSC and which patients can take daily without having to worry about developing other conditions.

20 Summer 2018

I can get really competitive playing handball and always give 100% on the court. During my time at University College London, we came second in the British University Handball Championships. Then, while at Oxford, we won that title twice in a row – a feat that has never been accomplished by any other university team. I am also an experienced yacht skipper and regularly cruise the North, Baltic and Mediterranean Seas with a group of friends. Now is the time for us to explore the American waters and perhaps attempt the challenge of crossing the Atlantic!

Read a full version of this interview at www.tuberous-sclerosis.org TSA SCAN 21


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TSCommunity

Who could possibly forget the wonderful events of 19 May 2018? No, we’re not talking about the marriage of Meghan Markle and Prince Harry (amazing though that was), but the TSA’s Outlook Event in Manchester.

Outlook report

Forty adults with TSC met in Chancellors Hotel, Fallowfields, and enjoyed a day-long programme which included sessions on using technology, a clinical update from Dr Chris Kingswood and a laughter yoga workshop. Also Janet Bower, one of the first ever members of staff at the TSA and long time supporter of Outlook, was presented with an award to recognise her hard work and commitment.

k and c a b d e e f resting e t n i e m o f the day s o d s e e r c a n h e i s r pe ple Some peo n their lives and ex so comment

Lots of people with TSC enjoyed meeting each other at the TSA’s Outlook Event

“I thought the event was excellent. This year the events were a lot more interactive and focused for people with TSC as adults (Outlookers). The staff were very welcoming and clearly worked very hard to make it a great day. Thank you.” Clare

“This is my family” Clare Kassa, the TSA’s Head of Information and Support Services , who led this year’s event, said: “The day was fantastic and the energy in the room was pretty inspiring. It was brilliant to see people catching up with old friends, as well as new people being warmly welcomed into the group. As someone new to the TSA, it was very powerful for me to hear first-hand, people’s experiences and witness the importance of peer to peer support. The turnout was amazing, and our Chair, Martin Short, says that he cannot remember so many people at an Outlook event before. I think we all agree that the most memorable session of the day was the Laughter Workshop – such fun and everyone entered into it wholeheartedly.”

Janet

You can meet other people affected by TSC at the TSA’s BIG DAY event in November

“Getting a really good consultant and support through this group means you’re almost there” “The range of symptoms makes me feel like I’m playing TSC Bingo”

“I enjoyed meeting with friends I hadn’t seen for many years, it was like we had never been apart. I can be me when I’m at TS Events, where in the “real world” I have to edit myself a lot.”

“Everolimus has changed my life – it has really helped reduce my anxiety too”

“Coming to the Outlook group is the only place in the world where I am able to ‘me’”

“I have TS and I’d like to thank the TSA for doing the research that helped me when I had my two children” “I feel refreshed and re-energised and armed with new information to take away and use.”

If you are an adult with TSC and looking for support, please call 0207 7922 7731 or email outlook@tuberous-sclerosis.org 22 Summer 2018

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TSCommunity TSCure

Keynote

BIG things are coming! Our annual BIG DAY event will be held on Saturday, 10 November at Sheffield Hallam University.

This year’s TSA BIG DAY will have a new format to make sure you get the most out of the event

For 2018, the keynote presentation will be on Epilepsy, given by Consultant Paediatric Neurologist Dr Sam Amin, Dr Sam Amin and experts from charity. Partners will run workshops on sleep and challenging behaviours. The day will also include the TSA AGM, an update on the TSA’s work from our Chair and Chief Executive and a round up on the research TSA is driving from TSA’s Head of Research Strategy Dr Chris Kingswood. Once again, you will have the opportunity to book oneto-one sessions with clinicians and researchers.

There will be a full day of presentations, workshops and opportunities to meet with the TS community. And this time round, inspired by the TS Alliance’s world conference, the event will be divided into two tracks – Children and young people, and Adults – to make it easier for you to navigate.

The TSA is pleased to fund two members of the community to attend the 2018 TS Alliance World Conference in Dallas Texas during July.

Carole

Carole and Annemarie will be attending presentations and networking sessions throughout the conference. Do keep an eye on our website and social media channels for Annemarie interviews with Carole and Annemarie ahead of their trip, updates during the conference and their blogs, afterwards, detailing their experiences. Carole stated: 'I am thrilled to be awarded a bursary to attend the TS Alliance conference! I will feedback on as many sessions as possible, particularly around TSC and adults.' Annemarie said: "I'm excited to be able to hear the latest research news, make new connections and share my experiences.”

Siblings group

24 Summer 2018

Carole and Anne-Marie off to Dallas

Carole Hagan is from Lincolnshire and has an adult daughter with TSC. Annemarie Cotton is from Cheshire and has a 14-year-old daughter with TSC.

BigDay is always fun with lots to do and people to meet!

We will be running morning and afternoon sessions for siblings of children with TSC at this year’s BIG DAY – these will give children a chance to meet others who have a brother or sister with TSC, take part in some sibling activities and have some fun together! Places are limited, so booking is essential!

TS Alliance World Conference – Funding UK representation

Also attending, from the TSA, will be Clare Kassa, Head of Support and Information Services. Dr Chris Kingswood will also be there presenting.

Crèche We will be providing our experienced, qualified and fun-packed creche again this year. Children with TSC from 0-16 will be supported by 1-1 support. Due to this we have to limit places to just 20. Please book early to avoid disappointment!

To find out more, to book and for assistance with booking, go to www.tuberous-sclerosis.org Or you can book direct at Eventbrite: goo.gl/6mJDXV

We would be really interested to hear about any other members of the TSC Community who are going to the conference. It would be great to build awareness of the UK contingent, share photographs and fly the flag for Team TSA! Please let us know at research@tuberous-sclerosis.org TSA SCAN 25


TSCommunity

In your region

In your region In England

In your region TSCommunity

Wherever you live, your TSA’s Advisers will offer help and advice on all things TSC. Here, they update you on what’s happening where you are… Are you due a tax discount?

The NHS England public consultation on funding everolimus for TSC related epilepsy in England has now closed. A huge thank you to everyone who responded.

Thank you!

To find out more, go to page 18, www.tuberous-sclerosis.org or our social media sites (details on page 1)

New TS clinic in Newcastle Since January 2018 the Royal Victoria Infirmary in Newcastle has been offering a 3monthly multispeciality clinic for patients and their family members with TSC. This clinic provides expertise in adult and paediatric nephrology, neurology and clinical genetics and involves specialists in respiratory, dermatology, cardiology and paediatric neurology as required. Consultant nephrologist, Professor John Sayer, heads this new clinic, working with consultant paediatric nephrologist Dr Yincent Tse, neurologist Dr Rhys Thomas and clinical geneticist Dr Alex Henderson. More information on our website and for a referral please contact TSA Adviser Christine Beal (contact details on the back cover).

26 Summer 2018

New council tax rates were introduced in England in April. If you are a carer, have large equipment at home to help with a disability or receive certain benefits, you may be eligible for a discount. Each local authority administers its own scheme so discounts vary from area to area.

To find out if you can get a discount, contact your local office. Details will be on your council tax bill.

A helping hand

In Scotland Save the date The TSA’s

Scottish Get Together 2018 will take place on Saturday 25 August in the Clinical Genetics Building of Glasgow’s Queen Elizabeth Hospital. All affected by TSC in Scotland are very welcome to attend this free event. Speakers will include the TSA’s Head of Research Strategy Dr Chris Kingswood and Family Fund’s Salena Begley MBE. To find out more, go to www.tuberoussclerosis.org or call TSA Advisor Lynn Shields

A number of charities have recently published some useful guides: The Helpful Guide for Families with Disabled Children from Contact (formerly Contact a Family) This book is jam-packed with useful information on a huge range of topics, including diagnosis, caring for yourself, education, working, childcare, holidays and financial help. To get a copy, go to www.contact.org.uk or call 0808 808 3555 Cerebra’s parent guides Cerebra supports families and carers who have a child with a brain condition. As part of its work, it produces parent guides, including those specifically for people living in England. These include one about education, health and care (EHC) plans, transition to adulthood and carers’assessments. To find out more, go to www.cerebra.org.uk and search for EHC plans or call 0800 328 1159

Enquire here for learning rights Enquire is the Scottish advice service for additional support for learning. Its mission is to: • raise awareness of children’s rights to extra support in school • help families and schools work together to ensure children get the support they need • provide advice to children and young people who might be struggling in school. Enquire’s easy-to-read parents’guide explains you and your child’s rights, local authorities’duties, what to expect at meetings and much more. To find out more, go to www.enquire.org.uk/publications or call 0345 123 2303

What is a carer? The Carers Act 2016 took effect in April. This means you no longer need to be providing a‘substantial amount of care for someone on a regular basis’to be defined as a carer in Scotland. Local authorities must now consider if support should include breaks. They must also establish and maintain an information and advice service for carers. To find out more, go to www.gov.scot and search for Carers Scotland Act 2016. If you’re a young carer, go to young.scot and search for Carers Act.

On the map Promoting a More Inclusive Society (PAMIS) works with people with profound and multiple learning disabilities in Scotland. Its website includes a map of 167 Changing Places toilets, vital for when you are out and about. To find out more, go to www.pamis.org

NEWSFLASH!!! Turn to page 18 to read about the Scottish Medicines Consortium decision on everolimus for epilepsy

Social security changes The Scottish government will take over responsibility for 11 devolved benefits by 2020, including Carer's Allowance and Disability Benefits. It can also make changes to the way universal credit is paid.

To download a carers’ rights factsheet, go to www.carersuk.org or to watch a video update on plans for social security in Scotland, go to www.youtube.com/watch?v=XWEHMS8kG-8&feature=youtu.be

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In your region

In your region TSCommunity

In Wales

In Northern Ireland

Epilepsy Action has moved

Is the Well-being Act working for you?

100,000 Genomes Project officially launched in Wales The 100,000 Genomes Project was officially launched in Wales in February. Welsh Health Minister Vaughan Gething and Professor Julian Sampson from Cardiff University introduced the UK-government-initiative at the Rare Disease Day 2018 reception at the Senedd in Cardiff. TSA ambassador Marie James and her husband Perry represented the TSA along with TSA Adviser Ellie Russell.

Carers Wales wants to find out how well the Social Services and Well-being (Wales) Act 2014 is working. The campaigning group has set up a short online survey asking for carers’experiences to help ensure all Wales’s local authorities are fulfilling their legal obligations. To take the survey, go to www.surveymonkey.co.uk/r/StateofCaring2018

Raising awareness

To find out more or discuss a referral, contact Ellie Russell

28 Summer 2018

By completing a short survey you can help improve healthcare services throughout Northern Ireland. The 10,000 Voices initiative has been launched by the Public Health Agency and Health and Social Care Trusts to introduce a more patient-focused approach to services. It gives you an opportunity to share your experience of using the NHS in Northern Ireland and highlight what is important to you.

Clare Watson, Northern Ireland Manager Epilepsy Action Northern Ireland PO Box 2224, Belfast, BT1 9YU Tel: 07885 778585 (please note 028 9063 4942 is no longer in use) Email: cwatson@epilepsy.org.uk Website: www.epilepsy.org.uk

To find the contact details of your local TSA Adviser, go to the back page

Free support services

To find out more, contact Rhys Vaughan on 02921 847083 or Gabriella Juma on 01291 841712, or email 100k.genomeproject@wales.nhs.uk

TSC clinics take place every month at the University Hospital of Wales in Cardiff.

Add your voice for a better patient experience

To find out more, go to www.10000voices.info or call 028 950 89827

The Project sequences whole genomes from NHS patients, focusing on rare diseases, some common types of cancer and infectious diseases. Its aim is to create a new genomic medicine service for the NHS, transforming the way people are cared for.

Support clinics

Epilepsy Action Northern Ireland has moved premises. Its new contact details are as follows:

TSA Adviser for Wales Ellie Russell has been talking to healthcare students to raise awareness of TSC. She visited students on health and social care courses at the University of South Wales and the Genetic Counselling course at Cardiff University to tell them more about the rare disease and the work of the TSA. If you’d like Ellie to come and talk to healthcare professionals or students near you, get in touch.

The British Red Cross in Northern Ireland is offering free support services for people aged 18 and over. These include support at home, community connecting and assisted discharge services, which are available in specific areas. To find out more, contact Independent Living Service Manager Elizabeth Boyd on 028 90 735352 or 07710 711170, or email elizabethboyd@redcross.org.uk

New Mobiloos

Three new Mobiloos have been launched in Northern Ireland and the Republic of Ireland. The specially designed facilities for people with disabilities aim to help everyone enjoy outdoor events, knowing that accessible toilets are available. To find out more, go to www.mobiloo.org.uk or call 0300 030 1255. If you would like to book a Mobiloo for your event, email info@mobiloo.org.uk

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A marathon effort

Introducing Kathryn and Tanya - and now we are two! Dividing and conquering (TSC) – quite literally!

Our 2018 #TeamTSA Virgin Money London Marathon runners have done us proud With temperatures reaching 24 degrees, this year’s Virgin Money London Marathon on Sunday 22 April was the hottest ever. Undaunted, our five #TeamTSA runners rose to the challenge and between them have raised more than £18,226.24 for the TSA.

Kathryn Harrison 2018

kathryn.harrison @tuberous-sclerosis.org 07922 838 960

At the TSA we endeavour to give everyone who engages with us an experience where they feel valued and supported. This includes people living with TSC as well as all our amazing fundraisers and volunteers. We have therefore decided to combine the fundraising and volunteer coordination roles into one and then divide the country into two – north and south.

Tanya Darnton tanya.darnton @tuberous-sclerosis.org 07923 412 234

4hr46m

Jamie Wareing Preston Council employee Jamie, whose daughter Elsie (2) has TSC, was the first #TeamTSA runner to cross the finish line.

Graham Sale Graham was next in. The British Airways pilot from Sussex, whose wife Adrianne has TSC, completed his second London Marathon for #TeamTSA. Huw Knight Huw from Devon was our third finisher. The Novartis employee, has worked closely with the TSA for years.

5hr4m 5hr16m

Kris Stafferton Essex-based manager of Greggs Kris, father to Faith (2), who has TSC, gave #TeamTSA a 100% success-rate at 2018’s London Marathon.

A huge thank you to you all our runners and to everyone who supported them on their London Marathon journeys. Whether you sponsored them, shared their stories on social media or came along on the day to cheer them on, it meant a lot.

You can see the areas they cover on the map below. A review will take place in September about how we will manage the regional groups going forward but until then, both Tanya and Kathryn will be available to you, depending on where the event is located. For further information, please get in touch via email or phone – we are always delighted to hear from anyone wanted to get involved.

Challenge yourself with #TeamTSA

#TeamTSA children’s hoodies (sizes 3-4, 5-6, 7-8, 9-11) – £20

Shop

TSA pin badge

TSA

Our distinctive running vest

(sizes S, M, L, XL and XXL) – £25

(one size) – £8

£3.50

£1

#TeamTSA adult’s hoodies TSA Hessian bag

To order, go to www.tuberous-sclerosis.org/shoptsa or call 020 7922 7731 30 Summer 2018

6hr33m

Some people ran the London Marathon to raise money for the TSA There are lots of other ways to raise money

Running isn’t the only challenge you can take to raise funds for us. However you like to get your adrenaline rush, there’s an event for you: Tackle an assault course – how about trying Tough Mudder, go to www.toughmudder.co.uk

(sizes S, M, L and XL) £5

3hr48m

Richard VennardWelsh Water’s Richard Vennard, from Cwmbran, is granddad to Elsie Wareing (above).

By doing so we have the opportunity to provide better and more cost-effective support in the region to make sure you are getting the best out of the TSA. We are pleased to announce that Kathryn Harrison is now the Fundraising Manager for the North of England (in blue – she’s a City fan!) and Tanya Darnton is the Fundraising Manager for the South (a Southampton supporter!).

TSA t-shirt

TSCommunity

Ride a zip wire – if you’re going to do it, you might as well do the biggest zip wire in Europe. www.zipworld.co.uk Do a bungee jump – they run across the country, so why not take the leap? www.ukbungee.co.uk

Do a sky dive – do it as a group or as an individual at bases across the country, and claim a free jump if you raise the minimum sponsorship. www.skylineparachuting.co.uk Swim or cycle for us. To find out more, go to www.tuberoussclerosis.org/new-challengeevents/biking-swimming

To find out about more challenge events, go to www.tuberous-sclerosis.org/challenge-events.html or to create your own contact our fundraising managers Kathryn and Tanya on fundraising@tuberous-sclerosis.org or 020 7922 7731 TSA SCAN 31


TSCommunity

Get involved

There is always something happening when it comes to learning about TSC and raising money for the TSA, here are just some of the events coming up over the next few months...

Prudential RideLondon – Surrey 100, Sunday 29 July Celebrating the legacy of the London 2012

London to Brighton Cycle Ride, Sunday 16 September For the

Olympic and Paralympic Games, this 100-mile, closed-road route takes riders through the capital and into Surrey's stunning countryside. We have seven places and entry is free with the commitment to raising a minimum of £600. To find out more, go to www.prudentialridelondon.co.uk/events/100

first time, we have the opportunity for our supporters to take on the challenge of the iconic 54mile London to Brighton bike ride. To find out more, go to goo.gl/ddnBxN

London to Paris Bike Ride – Tour De France Special Edition, Thursday 26Monday 30 July We are looking for #TeamTSA cyclists to take part in this four-day celebration of cycling. Registration is £125 with a commitment to raise a minimum sponsorship of £1,450. To find out more, go to www.londonparisbikeride.co.uk

Scottish Get Together, Saturday 25 August The TSA’s Scottish Get Together 2018 will take place in the Clinical Genetics Building of Queen Elizabeth Hospital in Glasgow. All affected by TSC in Scotland are very welcome to attend this free event. Speakers will include the TSA’s Head of Research Strategy Dr Chris Kingswood and Family Fund’s Salena Begley MBE. To find out more, go to www.tuberous-sclerosis.org or call TSA Adviser Lynn Shields

Great North Run, Sunday 9 September We have eight places on this 13.1-mile course from Newcastle to South Shields. Entry is free with a commitment to raise a minimum of £500 for us. Places will be allocated on a first-come, first-served basis. To find out more, go to www.greatrun.org/great-north-run

Study Day: Education Professionals – Wednesday 10 October A Continuing Professional

From baking cakes to running a marathon and giving time to donating money, there are so many ways you can help the TSA at work Whether you are a small organisation or a big business, fundraising for the TSA can be great fun and doesn’t have to take up too much time. You could:

Become our charity of the year

TSA Charity of the Year

Maybe consider nominating the TSA as the charity your organisation could support for the next 12 months.

2018

Development (CPD) study day for health, social care workers and educators at The Park Inn, Cardiff.

Participate in an event Great South Run, Sunday 21 October We have five places for #TeamTSA runners to take part in this fast and flat, circular, 10-mile run, which starts and finishes in Southsea. Entry is free if you raise a minimum of £250. Places will be allocated on a first-come, first-served basis. To find out more, go to www.greatrun.org/great-south-run

TCS New York City Marathon 2018, Sunday 4 November We are delighted to be able to offer a once-in-a-lifetime opportunity for our #TeamTSA running community to take part in this iconic event, thanks to specialist travel firm Sports Tours International. To find out more, go to goo.gl/pRgR14

TSA Big Day 2018, Saturday 10 November The TSA Big Day 2018 will take place on Saturday 10 November from 10am to 5pm at Sheffield Hallam University. To find out more, go to page 13 or www.tuberous-sclerosis.org and watch our social media sites for regular updates

To get involved in any of these events, contact Kathryn Harrison, Fundraising Manager (North), on 0161 681 6015 or kathryn.harrison@tuberous-sclerosis.org, or Tanya Darnton, Fundraising Manager (South), on 023 8073 0823 or tanya.darnton@tuberous-sclerosis.org 32 Summer 2018

Work place fundraising

Perhaps get a team together for the Great Manchester 10k or work with our fundraising managers to create a unique team building day to raise money

Sponsor us Publicise your brand among our UKwide community by sponsoring an event, such as the TSA BIG DAY, or a specific aspect of our work, like the support we provide in Scotland

Hold an event If you’re feeling a little less energetic, try a bake sale or a coffee morning, such as Tea & Scones

Raise awareness Help spread the word about TSC and the TSA by sharing our social media posts and featuring our work in your company magazines, newsletters or emails.

Matched funding Often employers match the money you have raised at an event or make a donation to show their support, and raffle prizes are always very welcome too.

Payroll giving Payroll giving enables employees to give to the TSA straight from their gross salary (before tax is deducted). It allows employees to“give more for less”as the tax that would normally be paid to the government can be gifted to the charity too.

There are lots of ways that people can help the TSA while they are at work

To find out more, call 020 7922 7733 or email fundraising@tuberous-sclerosis.org TSA SCAN 33


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A BIG thank you! The 19 cyclists from JCB Power Systems who recently spent two days riding in the stunning Peak District. Team leader Paul McCarthy said,‘All together we cycled 2350 miles and climbed 195,000ft!’ To date #TeamTSA at JCB Power Systems have raised more than £900 for us. Special thanks to Ellie Welch, who has TSC, pictured serving at the counter, her mum Cheryl, manager Mitz Solanki and photographer Georgia Sandy. Together they have raised more than £200.

TSCommunity

Without our fundraisers we would not be able to do what we do – provide support, fund research and campaign for better treatments for people with TSC. In this edition of SCAN, we’d like to thank: The Charity Action Group at Phyllis Court Club for their very generous £1,000 inspired by Marsha Elms, who has a personal connection to someone with TSC. Tanya, our Fundraising Manager (South) is pictured here with Marsha and group chairman Diana Pearman, receiving the cheque.

Our friends in @TKMaxx Glasgow for their incredibly generous donation of £1,500 to help us to fight #TSC. Pictured is Kathryn, our Fundraising Manager (North) with TKMaxx Glasgow manager Scott presenting a very big - in every sense of the word Currys PC World in Coventry Airport Retail - cheque to us. Park for their #Father's Day fundraising for us. #TeamTSA’s Ashley Cordwell, John Turnbull and Lee Oxley walked the length of Hadrian’s Wall for us covering 73 miles in 7 days – albeit, as they put it,‘with a few beers along the way’. They were inspired by Ashley’s daughter, Bethany, who has TSC and so far have raised £625.

Kevin Alderton and Andy Wellington, both of whom have TSC, and who both completed the Watford Half Marathon for us raising more than £100. Way to go, guys!!

Adrian Hunt and his colleagues at Ian Black Consulting in Northern Ireland who organised a charity football tournament for us in early June, raising £2050 for us!

Natalie Sadlier and her husband James ran the Hastings Half Marathon in March, their first such event. They did it for their son Flynn and raised £1,471 for the TSA.

Jessica Ilic Inspired by six-year-old Boris Bunyard, who has TSC, Jessica, from Warminster, recently completed her first half marathon. She raised £1,381 for the TSA.

Mary and Marin Stone, owners of Café M in Timperley, Cheshire, held a fundraising night and had a collection tin in the cafe to support customer Ceri Ann Jones. Café M and its customers raised £174, as well as awareness of TSC. Green Power Advice South-Shields-based Green Power Advice fundraised for us throughout February with dress down days, raising £108.

Ashleigh Signs The staff at Ashleigh Signs in Normanton held a company raffle and raised £457.50.

Dan Murphy Carer Dan competed in an Ultra White Collar charity boxing match in Bath in support of his friend Matt Godfrey, who has TSC. He raised £2,948 for the TSA. Dan and Matt have also done two live radio interviews for us, supported by Matt’s mum and dad, Yolanda and Steve Turner.

West Yorkshire Police Customer Service Team Susan and David Reynolds organised a Christmas Jumper Day with the West Yorkshire Police Customer Service Team, raising £450.

Mum and daughter Adele and Mia Whittaker. Little Mia, has raised £600 for us thanks to a sponsored haircut and donated her hair to the Little Princess Charity.

In the past few months, the TS community has sadly lost several wonderful people who have all been touched by TSC in one way or another. They will be missed and we would like to thank all their families and friends for donating more than £1,500 in total to the TSA in memory of their loved ones, especially at such a difficult time.

Veronica Barnes from Blackburn raised £122 for the TSA by losing pounds for pounds in a January Slimathon.

In memory

Mary Williams Mary of Somerset passed away aged 99. Mary was grandmother to David, who has TSC and lives in a residential home, also in Somerset. We’d also like to say thank you to everyone who supported our Tea and Scones campaign this year including Alison Worden, Shelia Cook, Pat Gibbons, Claire Kirk and the Northern Ireland genetics service, Craig Ireland, Ellie Russell and City Voices Cardiff, Diana Guy, Victoria Collins and her colleagues at Thornhill Primary School, Sarah Best and Margaret Woolnoth. Together you have raised more than £3,000 for us. 34 Summer 2018

Andrew Flatt Andrew (38) had been part of the TSA family since its earliest years and was described by his former headmaster as“someone everyone knew and loved”. As well as donations in lieu of flowers at his funeral, Andrew’s family have planned to tackle the Yorkshire Three Peaks Challenge in his memory later this year. Tina Hall Bettina (Tina) of Hertfordshire passed away aged 82. Her family says she was much loved and will be sadly missed by her grandchildren Aaron, who has TSC, Georgina and Beth. Tina was also mother to Janice and Gary and mother-in-law to Terry and Tanya. Roger Dyson Roger of Northwich leaves his wife Gill and the wider family. Roger will be remembered for his sense of humour, unwavering enthusiasm for the TSA, especially the Manchester and Liverpool support groups, and his devotion to his daughter Vicky, who has TSC. TSA SCAN 35


Lynn Shields* covers Scotland. Lynn works Tuesday to Friday. lynn.shields@tuberous-sclerosis.org 01236 608 257

Christine Beal covers Yorkshire, Cumbria, Durham, Northumberland, Humberside, North West and Greater Manchester. Christine works Monday to Wednesday. christine.beal@tuberous-sclerosis.org 01924 849 937

Claire Kirk covers Northern Ireland. Claire works Monday to Wednesday. claire.kirk@tuberous-sclerosis.org 07724 591 485

Kendra Rhodehouse covers Midlands, East Anglia, Hereford and Shropshire. Kendra works Tuesday to Thursday. kendra.rhodehouse@tuberous-sclerosis.org 01159 384 260

Ellie Russell covers Wales. Ellie works Wednesday to Friday. ellie.russell@tuberous-sclerosis.org 029 2019 7672

Melanie Feek covers South West England. Melanie works Monday, Tuesday and Thursday. melanie.feek@tuberous-sclerosis.org 01752 657 263

Maureen Tossi** covers London and South East. Maureen works Monday to Thursday. maureen.tossi@tuberous-sclerosis.org 01865 865 089

TSA Support Map *Lynn Shields is the Senior Adviser for Scotland, Wales and NI. **Maureen Tossi is Senior Adviser for England.

TSA SCAN 16 SUMMER 2018  
TSA SCAN 16 SUMMER 2018  
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