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UK

magazine

The Magazine of the TSA

Edition 102 - Summer2013


In this Summer issue of Scan Magazine 2. Editor’s Message Best wishes from Isobel McFarlane

12.The Interview

In a world of change

14.TSC doesn’t have us What Outlook means for Andra Cambell

Experience of an mTOR Inhibitor

14-15. Forthcoming Events

Outlook, Annual conference and Scottish get together

Information and contact details

16. Learning From Each Other Ani, Oscar & Nicholas

Geographical & cultural barriers evident

17. A Huge ThankYou Message from the TSA Fundraising team.

Isobel McFarlane interviews Trustee Jean Wilson

TSA Awareness Week 2013

3. CEO’s Message 4.Trystan James 6.TRON Trial

7. Survey Highlights Gaps 8. Coming Full Circle 10. Darling Dylan

Interview with Catherine Falconer

18.Tea & Scones 4 TSC

Sophie Lording on her experience of TSA’s social media

20. Fundraisers Gallery

Some interesting facts and tweets from and to TSA

All the details for everyone you need at the TSA

11.Twitter & The TSA

Stories of fun-filled fundraising

24.Your Contacts

A message from our Editor

This time in SCAN, in addition to our usual messages about fundraising and round-up of your fundraising fun, we have included an article to help more people get on board with using social media to advance the causes of the TSA. We also take you through some varying personal experiences of having TSC in the family and what this has inspired people to do or how it has impacted on their view of the world. Among other things you will find a taster for this year’s Annual Conference and Outlook event and an interview with Genetic Counsellor, Catherine Falconer.

Read on; enjoy; be informed and do let us have your feedback and ideas for the future

With best wishes

Isobel McFarlane Editor, SCAN

Isobel.mcfarlane@tuberous-sclerosis.org

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Fundraising

Times change, and we change with them – Anon

100 years ago, this Latin quotation would have been widely known among educated Britons. Today, only a handful have heard of it.

We’re in a world of change, and charities are not exempt. So we are gradually changing the TSA – being careful to keep what is best, but adapting it to flourish in that changing world. The strength of the TSC community has always been just that – community. Good communication between members, staff, volunteers, supporters, researchers and professionals is vital if we are to continue doing the right things and doing them well.

Our ability to increase public awareness of TSC and to get strong messages to those who have influence in health, social care and welfare depends on how well we can communicate and coordinate our efforts. Our Progress We’ve first had to sort out our plumbing – our website and our other technology. We’re now focusing on big issues:

Research. Our recent major grant round was on a much greater scale than in recent years.

We received some great comments about the new-look SCAN in March. On behalf of everyone involved in putting it together – thanks for your feedback.

Editorial

Tempora mutantur, nos et mutamur in illis

Volunteering and localism. One of the issues that came out of our recent membership survey was the need for support closer to home. This year, we will be working through our new volunteering programme to progress local and regional support.

Isobel McFarlane

Colour coded articles in this issue are:

A message from our CEO & Chairman

Lobbying. At a time of fundamental reorganisation of health services, we’re lobbying for a much sharper focus on the treatment of Rare Diseases. To demonstrate our serious intent in this, the Board has recently committed the TSA to the short-term pump-priming of key NHS posts. Social media. Around a third of fundraisers who responded to the membership survey told us they were using social media to help raise awareness and collect sponsorship. Indeed, at the last count around 1,500 people are visiting our Facebook page each week. During TSC awareness month, more than 11,000 people visited our website; and our fundraising video reached more than 3,000 people. While 75% of visitors to our website were here in the UK, the rest were spread across the globe. That’s a big reach for a small charity such as the TSA. But meanwhile… Of course, Facebook, Twitter and the Internet aren’t for everyone. Traditional ways of communicating will always be crucially important. If you’re not into social media or the web, rest assured that the TSA will continue to bring you news in more traditional ways. Support, advice and information are still just a telephone call or a letter away. SCAN will continue to tell our story. For most of us, though, no matter what the technology of the future brings, nothing can beat meeting face-to-face. We hope that you will be able to join us for the 2013 AGM and Family Conference. We look forward to meeting with as many of you as possible in Warwick for some communication of the good old-fashioned kind. With best wishes

Research

Support

Jayne Spink CEO

Philip Goldenberg Chairman P3


Trystan James

Experience of an mTOR Inhibitor

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rystan our youngest son, now 26 years old, was diagnosed with TSC when he was eight months old. Despite our initial feelings of despair, it was a great relief to learn of the TSA and of the research projects; we focused our energies on raising funds and awareness, getting involved when possible with research.

Trystan is a lively young man, who despite these difficulties and his limited abilities endeavours to enjoy and lead a full life. TSC for Trystan means epilepsy, autism, severe learning disability, kidney AMLs (Angiomyolipomas) and skin problems. Since the age of 11 he has had annual kidney ultrasound scans and these have shown that multiple small AML’s have developed on both kidneys.

In 2006, after a period of being unwell, an AML of 17cms was discovered on his left kidney, and during the following years Trystan experienced worrying periods of sickness. Remarkably his kidney function is ‘normal’. There was concern that the AML had become sufficiently large to be causing significant abdominal discomfort and that this was the reason for his weight loss and hypertension. An MRI in

2010 showed that this AML had enlarged to greater than 20cm.

Clinical trials of a class of medicines called mTOR inhibitors were, by then, showing very positive results. Following careful consideration that ruled out other treatment options as unsuitable, there was a consensus of opinion from all involved, to try and reduce the size of Trystan’s problematic mass with Sirolimus (rapamycin) therapy.

Trystan’s father, Perry and I have found that making decisions for a child, although not always straightforward is not as fraught as when you have the added complexities of having to make decisions for an adult. It was also necessary to establish whether or not Trystan had ‘capacity’ to make an informed decision about treatment for himself.

There are so many others that have to have a say. We understood that not everyone who would like to take part in a clinical trial will meet the requirements for enrolment. Even once accepted onto a trial, there are no guarantees that you will be given the drug rather than a placebo. In making our decision that Trystan should take part we also considered that there were advantages of being able to take part in the trials, including access to monitoring and expertise and the opportunity for direct communication with researchers. Trystan’s situation, however, meant he was not suitable for enrolment into a clinical trial and so our only option was to seek treatment on compassionate grounds.

At this stage Perry, Trystan’s father, and I thought that having made the decision to treat with an mTOR inhibitor, everything else would fall into place. How wrong we were! Only then did the funding issues emerge!

Funding for treatment with Sirolimus failed to get approval and an application was made for Trystan to receive Everolimus on compassionate grounds. Thankfully this was approved by the drug company but then we required formal approval to release the drug from the hospital pharmacy. Additional complications arose from the involvement of multiple Local Health Board’s and differences between the way the NHS works here in Wales where we live and in England, where Trystan receives treatment for TSC.

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In 2011 Trystan was allowed to start on Everolimus therapy, a full year after treatment was first sought. His AML had in this period increased to 23 x 17 x 9cm. On starting treatment Trystan had initial difficulties with mouth sores which reappeared every few weeks, despite a regime for oral hygiene. He has also had increased prolonged periods of sickness and lack of interest in eating. His AML is currently ‘stable’ with further MRI’s due. Until a plan of action is in place continued treatment of Everolimus is recommended.

In November 2012 Everolimus (trade name Votubia®) was approved by the regulators for use in the European Union for the treatment of AMLs in adults with TSC, when embolisation or surgery is not immediately needed.

In my view, there also appear to be other benefits to the treatment; in particular Trystan’s facial angiofibromas are considerably improved. Whilst he did not have cognitive assessments before treatment, those who know Trystan well note enhanced cognitive abilities and marked improvement in his tolerance of others.

It was a great relief to learn that Trystan had been granted compassionate use of Everolimus and we very much appreciate his being given this opportunity of treatment but it is uncertain for how long he will be allowed to continue.

Marie James Trustee

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TRON Trial

TRON Trial Hits the Headlines

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he TRON (trial of everolimus in the treatment of neurocognitive problems in TSC) clinical trial has recently received coverage in the Welsh media. Among the selection of news items were a piece on ITV Wales, followed by an episode of S4C Corff Cymru – a Welsh language medical science series - which included an item featuring Trystan with interviews with Professor Julian Sampson and Dr Sally Davies discussing the role of genetic treatment in conditions such as TSC On June 5th, 2013 and 12th June The Llanelli Star and South Wales Post series published articles. Each featured Trystan’s experiences as outlined in Marie’s story, gave background to TSC and the TSA with details of the research that is taking place at the Institute of Medical Genetics at Cardiff University. Quotes in the press from Professor Julian Sampson and Marie James included the following:

"The potential benefits of this treatment include an improved quality of life for affected patients and wider benefits for their families and carers.”

– Professor Julian Sampson, Institute of Medical Genetics at Cardiff University

"The research into treatments to address the potentially devastating degenerative effects and complications of TSC gives affected families like ours focus and realistic hopes for the future improvement in managing the condition," Mrs James said. For further information or to discuss suitability and the requirements for participating please contact:

Prof. Julian Sampson / Dr Anurag Saxena Institute of Medical Genetics, Cardiff University Heath Park, Cardiff. Phone: 02920 746412 / 07972111530 / 02920 687619 Email: tron@cardiff.ac.uk Website: medicine.cardiff.ac.uk/tron-study/ Facebook: http://bit.ly/faceTRON Twitter: http://bit.ly/tweetTRON

Fundraising - Get Involved

Blenheim Palace Fun Run 20 Oct (Oxfordshire) th

Our friends at the Woodstock & Kidlington Rotary Club have this year chosen the TSA as one of the charities that will benefit from their Rotary Blenheim 10k Charity Run. New this year is a 5k run too. We’re looking for runners to take part and volunteers to help with stewarding and information stands.

Want to get involved?

Visit www.rotaryblenheim10.co.uk or contact Emma for more details. P6

Morden Cricket Club Match 26 August (Surrey) th

After the diagnosis of his son Alfie, 4 ½, in March, Stewart Small decided to use his love of cricket to fundraise for the TSA. The cricket club will be hosting a match Morden Cricket Club v the TSA. We’re looking for players for the TSA team (£5 per player including special event T-Shirt), no experience or equipment needed! They will be having a family fun day with BBQ, stalls, inflatables and events throughout the day, as well as the ‘big match’. What better way to spend a bank holiday?

If you want to join the team or find out more contact Stewart: smallstewart75@yahoo.co.uk or call him 07921 220 671

TSA Membership Survey highlights gaps

Our membership survey ran from November 2012 to 31 January 2013, attracting 205 responses, around a quarter of our membership.

O

ur membership survey ran from November 2012 to 31 January 2013, attracting 205 responses, around a quarter of our membership.

The data from this strong response has provided a fascinating “snap-shot” of people’s experiences and opinions. We now have a much better idea of what people with TSC and their families think of the TSA, and what things we could do differently or better.

The majority of respondents told us they were either “extremely” or “mostly” satisfied with the services we provide - a positive satisfaction score of 86%. What is more, all of our current services received a positive satisfaction rating. Overall, respondents rated all of our current activities as “very important”. We now know that we are doing the right things and doing them well.

Whilst this is good news, we are not complacent. The survey has highlighted that we have some geographical and cultural barriers to overcome if everyone is to have equal access to our services. One clear message is that many people want more services, events and support closer to home. We intend to respond to this by piloting regional support group meetings towards the end of 2013.

The other main purpose of the survey was to benchmark the satisfaction of our members with statutory services. The survey results underlined the important role that GPs play in TSC-related healthcare. They revealed that almost a quarter of respondents had attended a TSC specialist clinic in the preceding 12 months. We were surprised to learn that, over the same period, one in five respondents had needed emergency treatment as a result of TSC related problems.

In relation to education, respondents reported substantial difficulties in accessing support and obtaining statements of special educational needs for school-aged children. They also told us that they had struggled to access educational support.

Approximately 1 in 10 of people seeking help from social services had been unsuccessful. Common themes reported were failures in continuity of care and lack of understanding of the complexities of TSC amongst social care professionals.

It is clear that increasing awareness of TSC amongst health, social care and education professionals is an important activity for the TSA. What happens now?

The findings of the survey, together with other sources of evidence, will help us as we plan for the future. We’ll be conducting a follow-up survey in three years time to help us gauge the impact of any changes we make in response to your concerns. We will continue to look to our membership to play a key and active role in shaping the TSA.

A copy of the survey report can be downloaded from the website or if you prefer, we are happy to post you a copy.

Jayne Spink CEO

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Coming Full Circle

Isobel McFarlane interviews Trustee Jean Wilson

M

ore than forty years ago a desperate mother joined a group called ‘In Touch’ which put families in contact with others whose children also had rare diseases. That mother was Jean Willson who, six months earlier, had been told that her then sixmonth-old baby, Victoria, had Tuberous Sclerosis Complex. Remembering those early months Jean said:

“I can still remember the pain and the feelings of terror and being alone from that difficult time.”

London-based Jean started to write to another mother from Scotland, whose child also had TSC and they poured their hearts out to each other through these letters. The relief Jean felt from being able to share not just the bad but also the joyous moments with someone who genuinely understood, was immense. The friendship and mutual support that grew between the two young mothers ultimate resulted in the formation of the Tuberous Sclerosis Association (TSA), with Jean becoming one of the TSA’s very first Trustees.

She reflects now on how the organisation has changed since the very first meeting in a basement room provided free of charge by another charity with catering from Jean’s mother. Along with another founder member, Ann Hunt, Jean had set up the event, anticipating that perhaps ten people would attend – 60 people turned up. Jean said

“Everything started when a group of mums got together out of desperation and things developed from there with the production of the first ever information leaflets and circulation magazines.”

“Society has changed and so our ways of working must change with it.” Shortly after this, having served as a Trustee for a couple of years, Jean was inspired, as always, by Victoria, to train in social work. Throughout her distinguished and impactful career and campaigning activities, Jean has never lost her interest in and enthusiasm for the TSA and has recently made a very welcome return to the Trustee Board the TSA. She said: “Throughout her life, Victoria has always amazed and inspired me and she gives me the motivation to do what I do.”

Throughout the intervening years Jean has remained involved with the TSA in different ways such as giving workshop presentations in order to share her professional skills and knowledge. Victoria

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Jean Willson and the Mayor of Islington and Jean have also been dynamic activists lobbying Government and representing the voice of people with profound learning disabilities and complex health needs and their families. Victoria, now 43, is an ambassador for Mencap and Jean has been on Government Task Force for initiatives including Valuing People Now which sets out the Government’s strategy for people with learning difficulties - this formidable duo drawing strength from each other in the face of Victoria’s poor health.

When Jean accepted the invitation to rejoin the TSA Board of Trustees it seemed the natural thing to do despite recent efforts to reduce her workload. Jean is Chair of a large charity Centre 404 (formerly Islington Mencap) which provides support across many aspects of life for people with learning disabilities and their family carers in Islington and Camden. She is also busy as an independent consultant in social work. The TSA now have the benefit of Jean’s years of personal and professional experience as well as her passion for the organisation.

Looking to the future, Jean believes that the TSA must never lose sight of its responsibility to support individuals and families through all life stages from birth to the grave. Now operated and managed by a team of paid professionals and with considerably more members and support services than the last time Jean was a Trustee, she feels it is now more important than ever that the TSA is well-run with a clear organisational structure. Jean said: “Society has changed and so our ways of working must change with it.” When Victoria was born there was very little information about TSC available to families. Jean believes that the TSA’s responsibility to provide accurate information is just as important today when

Jean and Victoria people now have access to a baffling array of information sources, some more credible than others.

From their own personal experience, Jean and her husband, Norman, still recognise the benefit of linking families together so that people don’t feel so desperately alone and by signposting to local or specialist organisations who can provide practical and other help.

Reflecting her own passion, Jean would like to see the TSA having a strong voice in the disability world, lobbying opinion leaders so that the needs of people with TSC are not overlooked. She is particularly keen to raise the profile of people profoundly affected by TSC, like Victoria, and take into account their perspective. She said:

Having stepped down as a Trustee of the TSA in the organisation’s very early years to move into a career in social work, Jean led organisations supporting people with learning and other disabilities. Simultaneously, she continued to work as an activist both locally and nationally, addressing the injustices for people with learning disabilities and their family carers. Bringing with her the expertise she has gleaned, Jean has just returned to the current Board of Trustees of the TSA.

“I really hope that our story inspires others and gives some hope. Yes, TSC can be a disastrous and horrible condition but the important thing is what affected individuals and families make of their lives.”

The Willson family seems to have come full circle in more than one way as they face their greatest challenge since learning to cope with the terrifying news of Victoria’s diagnosis. Jean and Norman are now supporting Victoria in the best way they can as she receives palliative care through the final stages of renal failure. Jean is pleased to be back directly affecting the future of the TSA. She said: “I believe that there will always be a place for the TSA as there will always be a need to reach out to families like ours.”

as there will always be a need to reach out to families like ours.”

[insert in box or as extended photo caption] Having stepped down as a Trustee of the TSA in the organisation’s very early years to move into a career in social work, Jean led organisations supporting people L tolearning R - Norman Jean, Victoria and Tara she with and Willson, other disabilities. Simultaneously, when Jean honoured by Islington Council continued towas work as an activist both locally and with the award of Freedom of Islington in recognition nationally, addressing the injustices for people withof 40 yearsdisabilities work as anand activist Islington. learning theirin family carers. Bringing

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Darling Dylan

Sophie Lording, aunt to three and half year old Dylan Price who has TSC, has been volunteering her time and expertise to support the TSA’s use of social media.

S

ophie Lording, aunt to three and half year old Dylan Price who has TSC, has been volunteering her time and expertise to support the TSA’s use of social media. She is passionate about the potential for social media outlets to help charities like the TSA communicate and broadcast the voice of the people they represent. Working closely with Emma Damian-Grint to support community fundraising activities, Sophie is also concentrating on how social media can help the TSA create communities with other organisations with shared interests, such as patient groups supporting issues like autism or epilepsy.

In this article Sophie shares a few tips on how you can contribute to raising awareness of TSC and support fundraising through social media

Sophie’s sister is Dylan’s mother, Alice. Sophie is very aware that both Alice and her husband Stuart, feel deeply grateful to the TSA for the support the family have received. At this year’s London Marathon Sophie came along to support another of Dylan’s aunts, Sian Lugg. Sophie was struck by the positive impact running the marathon for the TSA had on Sian. This inspired her to find something she could do for Dylan and the TSA, preferably something that didn’t involve marathon training!

Sophie’s timing was perfect. She began to research the TSA at the very point that Twitter and Facebook went live for the first time. As she has considerable social media experience through her work, she offered her services not anticipating a quick reply. Sophie was delighted by the immediate, warm and eager response her offer received, even, she says, when her enthusiasm for devising plans and strategies was “bubbling away almost uncontrollably”.

Let’s meet Dylan...

Dylan Price was diagnosed with TSC when his paediatrician mother, Alice was pregnant. Cardiac (heart) tumours were picked up on antenatal scans. Even with her medical training and the help of fellow doctors, Alice was in the same position as the rest of her family - awaiting Dylan’s birth with lots of unanswered questions and worry about how Dylan was going to be affected.

So who is the little chap who has motivated all this support for the TSA?

Even so Sophie feels that the prenatal diagnosis was a good thing for the family overall as it gave everyone time to understand enough about TSC to be ready for Dylan’s arrival. At birth genetic testing confirmed Dylan had TSC, but that both his parents were unaffected. His seizures started at the age of three months.

Dylan was quickly started on medication and with his seizures under control he has developed into a happy little boy. Sophie is very proud of Alice, and in awe of the way she copes and calmly monitors Dylan’s progress to ensure he gets any treatments in a timely manner. Until Christmas 2012 the longest Dylan had gone without a seizure was four weeks, but following change in the dose of his medication in the New Year Dylan has been seizure-free. He is now doing well in preschool (he loves books and dinosaurs!) and he is expected to enter reception without any educational support. He does receive regular help from a speech therapist. Dylan already has facial angiofibromas, but Alice is keeping a watchful eye on developments in skin creams for TSC facial rashes. Annie, Dylan’s little sister, was born in February and found to be unaffected by TSC.

Blissfully unaware of what has already been achieved in his name, Dylan is described by Sophie as ‘a complete darling.’ She and her whole family delight in him and ‘Darling Dylan’ will doubtless continue to inspire others and bring more joy as he grows.

Twitter & the TSA T

witter is a free microblogging service founded in 2006. At its core are 140character messages called tweets. Users can include links to other content in their tweets, search and collate topics using hashtags (#) and ‘follow’ other users. Twitter currently has over 200 million active users and they create over 400 million tweets each day.

• The TSA’s twitter handle is @UKTSA.

• Twitter really is what you make of it. Some like its immediacy for spreading news; some find it useful to ask questions of their peers. Others prefer to use it purely for following the people or topics they're interested in.

• It's all about discovery and connection.There are people talking about topics related to TSC all over the web, all the time - @UKTSA helps supporters navigate them. • Twitter is a quick and easy way of staying in touch - whether this is with fundraisers sharing their good news, or with individuals looking for advice or information. For the TSA specifically it's an amazing real-time bridge between supporters of the TSA and people who work in related areas. • Twitter is a fantastic place to raise awareness not just with the public, but also with the media and public figures.

• The aim is to build a real online community, where the TSA supporters can support each other. Here are a few examples of some of @UKTSA tweets from across May, including the reasons behind them and how many potential Twitter users they reached.

Connecting with associated charities

It's the end of #epilepsyweek - great work @epilepsyvic @youngepilepsy @epilepsyaction This tweet was retweeted twice and reached 6,156 users.

Helping to spread requests and research

16-60 with #TSC? Cardiff University are running a trial & need you! (via @TRONstudy) http://t.co/jXdbt5af7d This tweet was retweeted twice and reached 106 users.

Supporting fundraisers

Dylan with baby sister, Annie P10

Catch up w/ the @ashmoleandco cyclists' adventure for #TSC - great pics & an inspiring blog: https://t.co/EHY6ObCGaDhttp://t.co/oUiUYTo8cU This tweet was retweeted 4 times and reached 989 users.

Sharing press coverage of TSC issues

Tune into @RadioPembs this morning to hear how our wonderful @Ashmoleandco cyclists are getting on!

#TSC

This tweet was retweeted twice and reached 787 users.

We're delighted that @phillyvanilly78 made the front page of @yorkpress - raising awareness about #TSC Take a read: http://t.co/yuUMITtd9m This tweet was retweeted once and reached 482 users.

Creating awareness among big brands

The perfect lunch for #TSC awareness week - we think so! #TeaandSCones @Roddas_Cream http://t.co/QP0zHEeC5A This tweet was retweeted twice and reached 5,887 users.

Being generous with our thank yous and RTs

@csie_uk TY for the follow! Just in time for #TSC awareness week, which kicks off on Monday. This tweet was retweeted once and reached 5,988 users. After all the #TeaandScones stories in May, we’re looking forward to tracking the #3peaks fundraisers through their June training and final challenge on 22 June.

We’re always looking to share more stories, news and pictures through our social networks (we’re also on Facebook,YouTube and SoundCloud) so if you’re on any of them do come and say hello, if not email Emma on social@tuberous-sclerosis.org with your news and we’ll take it from there. For those wanting to start tweeting or just find out more about it,Twitter has a great help centre that can help with understanding the basics.

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The Interview

The Interview

Interview with Catherine Falconer: Genetic Counsellor and Chair of the Tuberous Sclerosis Association’s Research Committee.

1

How did you first get involved with the Tuberous Sclerosis Association and how has your relationship with the Association developed since then?

In 1990 I was given funding from the TSA to support a TSC Clinic for ten hours a week. It was perfect for me at the time as my children were young then. This became the springboard for a career in genetics as I took further training and moved into other posts.

Nowadays the main body of my work as a genetic counsellor is more general as I work with all genetic conditions, not just TSC. However I still see a large proportion of people with TSC who are referred for genetic counselling both in my main role and twice a year when I am part of the TSC Specialist Clinic in York run by Professor Pamela Crawford.

The TSA started me off on a career in genetic counselling and I will always be very grateful to them. This makes it even more enjoyable and worthwhile that I am now able volunteer my time and the skills I’ve developed by sitting on the TSA Research Committee Board which I have chaired for the past year.

2

What is your role as a Genetic Counsellor and how does this work at the TSC Specialist Clinic in York?

My role is to explain to patients and their families what the diagnosis of TSC can mean. If they are interested in

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What are your thoughts about the future for people with TSC?

testing then I would explain what is involved and the possible outcomes. If someone decides to go ahead with testing, I would then see them a couple of times during the process to explain their results and check how they are coping.

As Professor Crawford, who heads up the TSC Specialist Clinic in York, is a neurologist, the patients we see tend to be those with problematic seizures or other neurological issues. My role, however, is to help provide a more holistic service for patients attending the clinic; to run through the wider implications of having TSC and handle referrals for genetic counselling. Depending on their results I might involve a consultant geneticist to review a patient’s case.

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Newly diagnosed patients can come to me at any age; however I usually see very young children who have recently been diagnosed. Depending on their age I try to help the patient or their parents understand what their diagnosis of TSC means.

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There continue to be significant advances in the field of genetics such as new generation sequencing which allows us to process data in a more sophisticated way than before.

Newly diagnosed patients can come to me at any age

What sort of patients with TSC might be referred to you?

We meet several times a year and at weekends to review research applications and try to decide the most appropriate use of the TSA’s funding. I’m also able to help support recruitment for ongoing trials, such as TRON and EXIST II, by advising patients whether they are suitable and what is involved.

much more available option for all kinds of genetic conditions, including TSC. There is now NHS funding available for prospective parents considering this option although many conditions apply. For example, funding would not be forthcoming to parents who already have one child unaffected by the genetic condition.

I am happy to take direct calls from anyone who would like information and advice on this.

On other occasions people with siblings affected by TSC may ask to be referred to me when they are considering starting a family. In that instance I would first need to confirm the diagnosis in the affected person. I still come across very sad stories from older people with TSC whose diagnosis took years to obtain. Fortunately this situation seems greatly improved nowadays as most newly diagnosed patients I see are infants.

Occasionally patients are referred to me by specialists, such as renal consultants, who are querying whether their patient might have TSC. I have even seen an older

patient whose symptoms led to diagnosis of TSC when they were a child but when we did the testing it transpired that they didn’t have TSC after all.

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What are some of the more challenging aspects of genetic counselling and what are the interesting developments in this field at the moment?

I think the future for people with TSC looks encouraging. Although we have to continue to carefully review the side effects and efficacy of the new drugs, such as Everolimus, I have seen patients who have experienced real benefits from taking them.

Catherine Falconer

Principal Genetic Counsellor 0113 3924435

There are huge ethical implications with genetic counselling and it can be very complex. For example with an antenatal diagnosis of TSC we can only tell parents that their baby has the affected genes. We don’t have the information to advise whether their baby will have a mild or severe form of TSC. Parents have difficult decisions to make when TSC is diagnosed antenatally, particularly those people who only learn about TSC in the later stages of their pregnancy because of cardiac rhabdomyomas (growths in the heart). If parents are told their baby has Down’s Syndrome then they have some understanding of what this means; with TSC most people are floundering.

My role is not to judge but to help them through the complexity of the information and its implications and then once they have come to a decision to support them in whatever that is. Sometimes results are inconclusive and so we are unable to proceed and offer testing to relatives which is very disappointing.

In recent years pre-implantation genetic diagnosis (when an embryo is tested for a genetic condition before it is implanted in the mother) has become a

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We have TSC, it doesn’t have us What Outlook means to me

F

inding out I had TSC later on in life was devastating for me, as I am sure it is for all involved with TSC. I was misdiagnosed by a dermatologist in Liverpool back in the 1980’s as having acne rosacea and until that time, other than my facial rash, which had become quite severe and sensitive to things like make up and cold weather, the only other symptoms I had been aware of were the odd grooved fingernail and pits in my teeth which I had just laughed off.

My consultant dermatologist had been on sabbatical at that time but asked to see me on his return. After finding my shagreen patch and thoroughly checking my finger- and toenails and my teeth, the news was then broken to me that I had a genetic condition known as TSC. It was suggested I be referred to a genetic counsellor who would explain things in more detail and advise me on the risks of having a family.

I felt my whole world turn upside down and remember at that time removing a garnet ring I wore on the third finger of my left hand on my bus journey home that day. I was single then and marriage and having children had yet not been a consideration. I was in complete shock. Why me?

Most of my family were in total denial when I explained it to them and as I "looked and acted normal"; the consultant’s diagnosis must be have been very, very wrong.

Years later, married and learning to drive, I had a car accident resulting in a crashed car and stitches. Roughly nine months after this I began to have seizures and following a brain MRI scan, calcified tubers were found and TSC was found to be the cause. I was then put onto medication.

In 1995 after accidentally falling pregnant I made the sole decision to have an abortion and was sterilised. This was one of the most difficult, traumatic and emotionally upsetting decisions I have ever had to make. Even now, I am sometimes reminded of it. At that time of course, there was no pre-implantation genetic diagnosis or way of knowing whether a child would have TSC. Thank goodness times have changed and this is now an option!

My marriage ended a few weeks later and not long after that that I decided to come along to a TSC weekend for adults mildly affected with the condition.

My whole perspective on life dramatically changed with my involvement with Outlook and the TSA. I have found friends who are special, and many will be for life. Instead of feeling isolated, I felt like I had a second home and a second family. I count my blessings every day and realise how lucky I actually am and don't take too much for granted. "Life's not a rehearsal", as Janet Medcalf often reminded us all.

For me meeting up with Outlook means a total sense of belonging with others who are like-minded. From the very start I was welcomed with open arms and made to feel at home There are no barriers or judgement; you can just be yourself and become involved as much or as little as you like.

An Outlook event is something that Outlookers look forward to every year. There is a bonding with others who can sympathise and/or empathise with you. It’s a totally unique relationship.

Outlook has been a huge blessing in my life and helps me cope on a day-to-day basis. Without it, I would feel a bit lost, like part of me was missing.

Andra Campbell P14

Date for your diary:

This year’s Outlook event will be held at the Warwick Hotel on Sunday the 10th of November 2013, the day after the Annual conference which will be held at the same venue.We will be working together with the Outlook organising group to finalise the content to the day making sure we take feedback from previous events. It will be both social and informative allowing time to catch up with old friends and opportunities for new friendships to be made.

For those of you who will need financial support to enable you to attend a TSA event like the annual conference and Outlook, we have recently reviewed and revised our travel and support fund. For more information please visit our website http://www.tuberous-sclerosis.org/Info-and-supportresources.html or your local TSC Adviser.

We know that many of you have expressed a wish that the Outlook Event should return to being a weekend. This is a complicated matter so will be discussed in detail at the next Board meeting in September...then we will get back to you!'

Annual Conference Taster

This years annual conference will be held at the Hilton Warwick Hotel on Saturday 9th November.

Confirmed workshop speakers include: Dr Richard Appleton Epilepsy in children Professor Pamela Crawford Epilepsy and TSC in Adults Dr Chris Kingswood Kidneys and TSC Dr Finbar OCallaghan Brain and TSC

For those of you who wish to make a weekend out of it we have managed to secure preferential room rates at the hotel. The full programme, how to book a place and how to get there will be sent to everyone on our Outlook mailing list. If you didn’t get a letter about last year’s Outlook event or are not sure, contact a staff member and we will make sure that you are added to the mailing list.We will also post details of the event on our website and let people know via Facebook.

We have secured a bigger venue this year, taking into account the feedback received last year and are working hard to make this years event even better!

We will send members full details of the day, including the varied support we will be able to provide our members with TSC closer to the time. In the meanwhile please keep this date for your diary and we look forward to seeing you there.

Here are some of the things people have said about the event and the people that attend:

“I maintain contact with my TSA Outlook friends by email, phone and Facebook but nothing beats meeting them at least once a year for face-to-face support. This has given me so much confidence in myself over the years.”

“I’ve made some of my closest friends through meeting people at TSA Outlook events, who have encouraged me to accept, adapt and appreciate my TSC diagnosis today”

“We share what we have been through with each other but even when we are not discussing TSC, it makes a difference to be mixing with people who have had experiences similar to your own”

“People talk of the "buzz" after an Outlook event lasting for weeks afterwards. Personally I arrived as a scared new member and was literally welcomed with open arms”

“Outlook members come from all walks of life, have a variety of experiences and are different ages”.

Speakers include:

Dr S Joss Consultant Clinical Geneticist, from the NHS Tuberous Sclerosis Clinic in Glasgow, who will provide us with the latest information on the Clinic; a presentation and Q & A session. Natalie Frankish Development Officer for Scotland, Genetic Alliance UK, will provide us with the latest information from the Genetic Alliance. This will include their new ‘Navigating the Maze’ Project, which aims to support patients and patient groups to take an active role in their healthcare and enable people to influence the healthcare provision that they receive. Maggie Farrell National Training Coordinator for Self-directed Support, Princess Royal Trust for Carers in Scotland, will provide us with the latest information on this topical subject. Scottish members should by now have received an invitation with their Scottish newsletter but please contact Lynn Shields if you haven’t and would like to attend.

Saturday 31st August, 10.30am – 4.00pm at The Renfield Centre, 260 Bath Street, Glasgow G2 4JP www.rsscentre.org.uk

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Learning from each other Ani, Oscar and Nicholas

A

ni Hampartsoumian’s family is extremely proud of their sweet, gentle and pretty little girl who is loved by everyone. She was diagnosed with TSC as a baby, twelve years ago but her parents took some time to reach the stage where they could talk to people outside their close family about what had happened. Paul said:

“The most difficult part was that no-one could give us any answers about what might happen to Ani. It was too hard to talk about it.”

Since those anxious early days Ani has come a long way. She has some learning and behavioural delay and still suffers TSC-related seizures every day, although they are normally quite short during which time her family sits, holds her and talks to her until they pass.

understanding hadn’t improved much. Fortunately this time things worked out fine.

The Hampartsoumian family are grateful for the medical care Ani has received and for the instant and always available support they’ve received from the TSA. Paul said: “We’ve found it such a big help to have someone to talk to, particularly when we were struggling at the start to come to terms with things.”

Ani is looking forward to starting a new school in September which her parents believe will be perfect for her and she continues to thrive on the loving support from her family.

A

A huge thank you! Message from the TSA fundraising team

s Emma and I come close to reaching the end of our first year with the TSA, we would like to express our thanks to everyone who has fundraised for us over the past 12 months. You have amazed us with your dedication and generosity, and your creative ideas – you have climbed mountains, crossed deserts, organised tea parties and balls and even set up sponsored head shaves – you name it, you’ve done it!

Without your support, the TSA could not carry on with its vital work; funding research, supporting families and raising awareness, and we always want to make sure you always know your efforts on our behalf are greatly appreciated. We will of course always send you a letter and certificate, but there are other ways we can share your successes: SOCIAL MEDIA (e.g. Facebook/Twitter) Please do always email us ( social@tuberoussclerosis.org) a photo of your event and where possible, we will share it…

Paul believes the whole family has been changed for the better by having Ani in their lives, although other people’s reactions to a child with disabilities continue to frustrate him. Commenting on the fact that the standard first reaction to learning about Ani’s TSC is to ask if there is a cure, Paul said: “I’ve learned a lot about how society views disability from my experiences with Ani. People feel that TSC is a problem which needs to be fixed but we have realised that this is just the way things are supposed to be with Ani. As long as she isn’t in pain or unhappy we’re all fine.”

Finally, if you have any ideas of your own on how we can best acknowledge your support, we are always open to ideas – just email Emma or myself at fundraising@tuberous-sclerosis.org. Thank you again, and please keep fundraising!

Janet Brewer

Head of Fundraising

Emma Damian-Grint

Community Fundraising Manager

IMPORTANT

“It was phenomenal to see how effective this natural support from her sibling was for Ani.”

TSA WEBSITE Your success can inspire others! We are developing a page on our website which will feature community fundraising activity, and some stories will also appear in the News section – again please email us a write up on your event and a photo

Ani is also close to her youngest brother, Nicholas, and Paul and Yuko delight in seeing the caring, helpful nature of their sons flourishing in response to Ani’s particular needs.

P16

ANNUAL CONFERENCE This year we will be introducing a new “Photocall” slot during the lunch break at conference to thank our fundraisers – anyone who would like to personally hand over a cheque to our CEO, and receive a commemorative photograph, should email Emma at the email emma.damian-grint@tuberous-sclerosis.org . Don’t worry if you have already sent in your funds, you can still take part – we can provide a certificate of thanks which our CEO will present to you.

Please note new address if you are sending in a donation cheque, or a cheque from your fundraising event or activity: Andreas Woreth, Administrator, Tuberous Sclerosis Association, PO Box 71662, London NW3 9TE

There has also been a wonderful exchange of gifts between Ani and her brothers, Oscar (7) and Nicholas (3). Despite the raft of support from the NHS, Paul and his wife Yuko found the best therapy for Ani was being around her younger brothers, particularly Oscar, born five years after Ani. The two were instantly great friends and Ani engaged with Oscar so much that as he developed and learned to talk, so did Ani. Paul said:

The past twelve years have not been without challenges, particularly when it came to persuading their Local Education Authority to move Ani to a more suitable school. Paul describes the battle, which he and Yuko eventually won, as ‘exhausting, stressful and infuriating”. They were saddened again recently when it looked initially like they’d have to repeat the process over Ani’s move to secondary school as attitudes and

fundraising activity – from £10 raised by a child washing the neighbours’ cars one weekend, to a cycling team raising over £10,000.

Oscar and Ani Hampartsoumian

Front Cover: The Hampartsoumian family and Janet Brewer having a tea and scones celebration with Air Marshal I D Macfadyen CB, OBE, RAF, the Constable and Governor of Windsor Castle. Photos by Paul Hampartsoumian.

SCAN MAGAZINE We cannot feature all your fundraising in SCAN magazine, but we have a dedicated SCAN editorial board which will choose a selection of activity to feature in each issue. These will not necessarily be the activities which have raised the most funds – every penny we receive is much appreciated, and we aim to choose stories reflecting the broad scope of

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Tea & Scones 4 TSC

Lynwen Posser, congrats on your £265 for Tea & Scones

TSA Awareness Week 13th -19th May

M

ay saw the launch of our first ever Tea & Scones 4 TSC campaign, as the TSA moved its annual fundraising and awareness appeal to May to coincide with international TSC awareness month. Every TSA member was mailed a fundraising pack, with all the information they needed to organise their own Tea & Scones 4 TSC fundraising event - a welcome letter; thank you/information letter; recipe ideas; fundraising ideas; press release template and return donation form and envelope.

Support for the appeal was fantastic – celebrities Duncan Bannantyne, Hannah Gordon and Brenda Emmanus all agreed to put their names to scone recipes to promote the campaign - we had schoolchildren baking scones and selling them to classmates, work colleagues holding Tea & Scones 4 TSC afternoon tea parties. And, 12year-old Ani Hampartsoumian, who has TSC, even had Tea and Scones in the private moat garden at Windsor castle… The TSA also enlisted the support of families to promote Tea & Scones 4 TSC and to raise awareness of TSC generally throughout the UK. Here are just a few examples of the coverage received:

Pharmaceutical company Novartis also joined in the fun, holding their own Tea & Scones 4 TSC event in the office and cyclists grabbing tea and scones refreshments as they cycled hundreds of miles to raise funds!

Mandy Bastin, Grandmother of Chloe Boyles, was interviewed live on Jack FM talking about living with TSC and the Tea & Scones campaign

Philippa Ward, mother to Thomas with TSC, appeared on the front page of The Press (York) telling her story and advertising the Tea & Scones for TSC campaign .

Dr Kayleigh Dodd, Research Associate at Cardiff University, blogged about Tea & Scones 4 TSC in the Guardian blog on 26 April, 2013

In addition Chloe Boyles featured in the Hertfordshire Mercury; Niamh Short in the New Forest Post; Kate Harrington in the Wirral Globe and Rebekah Prosser in the Glamorgan Gazette. Many thanks for to these families for agreeing to support us with their story. Our cyclists from Ashmole & Co accountancy firm appeared live on Radio Pembrokeshire, telling the people of Wales about TSC and why they were fundraising. P18

Thanks to Alan and Diana Guy who raised a staggering £1270 from their Tea & Scones party

Twitter Finally, and as mentioned in Sophie Lording’s article, the Tea & Scones 4 TSC provided us with the perfect opportunity to push our newly launched Facebook page and Twitter activity. Here are some of the highlights:

Facebook

• 74 new members ‘liked’ our page during Awareness Week (we now have 350 likes attached to the TSA Facebook page)

• The TSA Awareness Week video that we produced and posted on the TSA Facebook page reached 3,226 individual users

Heather McManus, £400 for Tea & Scones is incredible. Thank you!

Lila Bellamy (8 yrs), who has TS, is pictured here holding her scones between her sister Miriam (10yrs) and brother Noah (6yrs) who are clutching the jam and cream pots. Lila bravely talked about her condition to her class mates at King David Primary in Birmingham and sold scones. They raised a £117. Thank you Bellamy family!

• Other posts reached on average over 500 individual users

Sophie Lording created an #TeaandSCones which allowed the TSA to search for everyone talking about the campaign on Twitter. We used the Tea & Scones 4 TSC campaign to promote the work of our charity and to connect to other organisations.You can look at our Twitter account at: www.twitter.com/UKTSA , but here are some of the highlights: • In Awareness Week the TSA sent 111 Tweets

• Press & radio coverage was publicised in real time, one tweet about the appearance of Dylan Harries on Radio Pembrokeshire reached 787 users. • We achieved 48 new followers in one week

• We connected with big brands involved with tea and scones, one company, Roddas Cream, retweeted about our TSA Awareness Month – this reached 5,887 users!

At the time of going to press, funds are coming in daily from the campaign with over £3,500 received already, but if you haven’t sent in your cheque yet, please send it today to: Emma Damian-Grint (Tea & Scones 4TSC), Tuberous Sclerosis Association, PO Box 4923, Sheffield S2 9EU. Thank you for your support and please do put a date in your diary for a Tea & Scones 4 TSC event in 2014! P19


Fundraisers Gallery

W

Darren and Jo Jackson have made an enormous donation of sporting memorabilia that Darren has collected over the years; all to be auctioned to raise funds. The items, including a signed picture and glove from Muhammad Ali, a signed photo frame from the 1966 World Cup Winners and Lewis Hamilton's signed cap to name but a few, have an estimated value of £10,000. Pictured is their daughter Ellie, who has TSC.

Dr John Horan and his wife Aisling completed the Paris Marathon, despite John walking the final 10k due to injury. Now that’s commitment to the cause! John’s nephew and godson, Tom, has TSC which made the cause personal. John and Aisling like to keep fit and were only too delighted to be able to run for the TSA. They raised €501, and we’re very grateful.

Picture: Darren Shipman

edding season is upon us, we couldn’t believe that Robert and Madeleine Evans wedding speech sweepstake raised £760 for the TSA!

Thanks and our best wishes for a very happy future together.. Contacts – Jan Blair trustee, mother of the bride

Brothers Matt and Luke Adamski wanted to run the Brighton Half Marathon for their little Indi, three years old with TSC.They finished in less than 2 hours and raised more than £1500. Eloise and Luke, Indi’s mum and dad, were married in July (see pic below) and have asked for donations to the TSA.We can’t thank them enough! If you’d like to congratulate Eloise and Luke you can donate through their JustGiving page: http://www.justgiving.com/eloiseandlukewedding

N

igel Heydon, professional darts player, is a big supporter of the TSA.This year he has already raised over £1,000 for the TSA by hosting Darts Exhibitions.Thanks to Nigel and his friend Dan Murray for all your help! Coventry City College played host to a fundraising stall for the TSA, raising £83. Ellie Welch, who has TSC, involved her classmates and they rallied to support her before she had some time off for laser treatment on her facial rash. Pictured L to R, Emma Damian-Grint, Ellie Welch, Paul Taylor (Coventry City College principal) The Virgin London Marathon was epic this year, with eight runners for the TSA. A huge debt of thanks to Sian Lugg, Darren Robinson, Anurag Saxena, David Donovan, Jonathan Jacobs, Robert Baker, Martyn Baxter and Charlotte Haskell for taking part. And, to Kerry O’Halloran and Chris Lugg, who were forced to pull out due to injury, but both raised an incredible amount of money for the TSA –

THANK YOU

This year our runners raised over £20,000!! P20

Get Running

Darren Robinson and his niece Lilly, who has TS.

Hollie Light completed the Leeds Half Marathon in under 2 hours and raised over £1000, all for her sister Amelia who has TSC. Go Hollie!

The Belfast Marathon Relay took place on Monday 6th May 2013. 17,000 runners took to the streets on what turned out to be an amazing day. Five friends from Northern Ireland, 'Marty's Angels', completed their relay in just under 4 hrs30 minutes in aid of the TSA. They are rightly proud of their achievement and were even heard uttering the words 'Let's do this again next year'!

Many thanks to Ricky Jones who raised £511 with £300 matched funding from DHL UK at a fun run last year. Ricky is pictured wearing black alongside fellow runner, Scott and in the middle Anna Chamley with daughter Katie who has TSC in the spotty pink coat and her little sister Alice.

David Clarkson ran the Manchester Marathon in a fantastic 4hrs 2minutes for the TSA. David reports that the support he received was fabulous and he really enjoyed the day. Through his wife, David is related to the family of Emma-Jean and Charley-Marie Skinner, who both have TSC. Well done, Uncle David who managed to raise over £600.

Paul Turnbull completed the Edinburgh Marathon in 4 hours 54, to show his support for the Morris family from Hamilton whose son Greg has TSC. He raised £816!

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...Fundraisers Gallery

...Fundraisers Gallery Everybody had a great time at the Purple Ball held in May, and it raised over £5,000 for the TSA as well as raising awareness of the condition amongst the 230 attendees. Jo Dale, wife of Nick Dale Trustee, is rightly proud of her success. Nick Dale has also completed his 69 mile run of Hadrian's Wall, he's already raised over £7000. Sportmad son, Sam who has TSC, should be very proud. What a family!

Accountancy firm Ashmole & Co, decided to host a range of fundraising events for the TSA, and raised over £12,000. Rob Vaughan, Trustee and father of Katie who has TSC, encouraged his fellow Partners and employees to embark on a 200 mile cycle; a sponsored walk and a skydive; all for the TSA. Big thanks to our Welsh dragons!

We all owe GDF Suez a huge debt of thanks after 16 riders completed an 80 mile cycle challenge and raised over £13,500! GDF Suez employee, Nick Budinger, has a daughter Olivia, 12, who has TSC. Colleagues undertook this mammoth challenge and GDF Suez matched fundraising with a donation of £1,500. Read more about their success on our website!

SRumunmneinrg

The Marathon De Sables is an event built for the brave and known as the toughest foot race in world. Mark Bentley, man and legend, raced across 142 miles of the Sahara in one week, led the race at 3 checkpoints, got 8 blisters, heat stroke and even lost a toe nail! But, unlike many others, Mark completed the race and has raised nearly £5,500, half of which was donated to the TSA. A blog of his adventure is on our website. Max Burton participated in a local 5km run…. dressed as Scooby Doo. He certainly earned his Scooby Snacks! Thanks for the £105 Max!

T

he Three Forts Challenge, run by Sarah Draper and her friend Susie, raised £367. We think 16 miles is a sterling effort. Thanks ladies. Another big thanks to Ed Dugdale, who took part in the Yeovil Half Marathon and raised £275.

B Volunteer with us!

ig thanks go to Mark Dartnell who ran the Brighton Marathon in support of his friend’s daughter who has TSC. Mark raised an incredible £695, go Mark!

Fundraising is rewarding, fun and a great way to learn new skills. Soon we’ll have a Volunteer Coordinator who will be launching a new volunteer programme for the TSA. But, for now, we’re looking for new fundraising volunteers to help us.

We have opportunities for:

• People to sell our Christmas cards • Volunteers to help run information and fundraising stands at upcoming events • Offer to put and monitor collection tins in local businesses • Volunteer to help at an event

Inspired by all our runners? Well, we still have places on the Great South Run, 27th October (Portsmouth) and the London Marathon 2014. Talk to Emma, or visit our website for more information. P22

P23


Your contacts at the TSA

O

ur TSC Advisers are part time, covering a large geographical area. Depending on the situation we’re asked to help with, our face to face support may not always be possible because of our distance away from you.

If you call, please do leave a message as your adviser could be attending a meeting or supporting someone affected by TSC. As we’re not based in a central office, it will only be your adviser who hears your message.

Our help can include:

• Listening to you and finding out how TSC affects you and your family • Looking at ways of managing your care • Providing support to help you and professionals coordinate care for you or the person with TSC that you care for • Providing information about TSC • Suggesting other helpful organisations and services • Providing TSC Awareness training, education and information for health, social care and education professionals

Support Services

Fiona McGlynn Head of

Development and Support Services, is responsible for the TSA support services (TSA member events, Study Days, TSA information leaflets and Support Services staff). She works 28 hours per week. PO Box 8001, Derby DE1 0YA fiona.mcglynn@tuberous-sclerosis.org 0121 445 6970

Fiona Clark covers the North East and

North West England and Wales. She works 21 hours per week PO Box 8001, Derby DE1 0YA fiona.clark@tuberous-sclerosis.org 01625 427 872

Maureen Tossi covers Greater London, South East and South West England. She works 28 hours per week. PO Box 8001, Derby DE1 0YA maureen.tossi@tuberous-sclerosis.org 01865 865 089

Lynn Shields covers Scotland. She CEO

Jayne Spink is the Chief Executive of the Tuberous Sclerosis Association. Jayne also has responsibility for matters relating to research. PO Box 71662, London NW3 9TE jayne.spink@tuberous-sclerosis.org 0208 690 2288

Fundraising Janet Brewer Head of fundraising

is your contact for information on general fundraising and giving to the TSA, and awareness raising. Janet works 28 hours per week. PO Box 4538, Windsor SL4 9DP fundraising@tuberous-sclerosis.org 01753 842 362

Emma Damian-Grint Community

Fundraising Manager is your contact for information on community fundraising, sponsored challenges and social media. Emma works 21 hours per week. PO Box 4923, Sheffield S2 9EU fundraising@tuberous-sclerosis.org 0114 270 1723

works 28 hours per week PO Box 8728, Airdrie, Scotland ML6 8WP lynn.shields@tuberous-sclerosis.org 01236 608 257 - 07510 595 968

Andreas Woreth Administrator

Your contact for general enquiries. Andreas works 21 hours per week. PO Box 71662, London NW3 9TE andreas.woreth@tuberous-sclerosis.org 0207 419 1920

IMPORTANT Please note new address if you are sending in a donation cheque, or a cheque from your fundraising event or activity: Andreas Woreth, Administrator, Tuberous Sclerosis Association, PO Box 71662, London NW3 9TE

Tanya Darnton

Volunteer Coordinatior. tanya.darnton@tuberous-sclerosis.org Please refer to website for further contact details. Tuberous Sclerosis Association is a Company Limited by Guarantee Registered in England and Wales No. 2900107. English Registered Charity No. 1039549. Scottish Registered Charity No. SC042780. Registered Office:Toad Hall,White Rose Lane, Woking, Surrey GU22 7LB www.tuberous sclerosis.org


TSA SCAN Magazine Summer 2013  

TSA SCAN Magazine Summer 2013

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