TSA SCAN Magazine Spring 2014

The Magazine of the TSAmagazineUK

Edition 104 - Spring 2014

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Colour coded articles in this issue are:

Editorial Fundraising Research Support

In this Summer issue of Scan Magazine

Isobel McFarlane

At last the rain has stopped and we have begun to see signs of spring andthe new start that it heralds.

This edition of SCAN looks at several new starts including thoughts from ourincoming Chair, Martin Short to an introduction and welcome to new staffmembers and a look at the refreshed TSA’s Research Strategy.

We’ve also had a word with our merry band of marathon runners, including anin-depth look at Millie Wood’s family and their commitment to fundraising forthe TSA. As well as taking us through the refreshed strategy for research, DrChris Kingswood also leads a call to action for members to get directly involvedin helping the TSA impact the way the NHS manages services for people withTSC.

Finally we celebrate your fundraising achievements including Rhys Mallinsonand family as featured on our front cover and call on you once again to supportthis year’s Tea & Scones for TSC awareness and fundraising activities.

With best wishesIsobel McFarlaneEditor, [email protected]

A message from our Editor

02. Editor’s Message

03. Chair’s Message

04. Letter from America

06. Welcome to Alison & Moira

10. Can the NHS be the Magnificent 7?

12. TSA partners with BMJ

12. Annual Conference

13. Volunteering

14. Tea & Scones for TSC

16. 2014 & beyond - Research Refresh

18. Marathon Gallery

19. Fundraisers’ Gallery

21. Outlook Consultation & Support Day

22. Important Announcement - New Address

23. Your Contacts

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A message from ourincoming Chair,Martin ShortTrustee Martin Short is taking over the position of Chairman of the TSA from PhilipGoldenberg who steps down this April. Here Martin introduces himself andoutlines his thoughts on the future of the TSA as he takes on this role.

It is a both humbling and daunting to be writing to introduce myself as the TSA’snew Chairman.

Nearly 30 years ago the TSA was a life-line, when, following the diagnosis of my elder daughter,there was someone to ring. That call was able to put our bad news into context and let us knowthat we would not be alone in all that lay ahead.

We joined the TSA, but that was almost the limit of our involvement. We read SCAN and went tothe occasional study day. I followed with interest the energy of the founder trustees in drivingresearch, raising funds and offering members support and advice.

The TSA then became much closer as Janet Bower, whom I knew in a different context, became ourTSA regional adviser. Janet felt I had something to offer the TSA support services team,particularly from a professional background in both pastoral care and communications. I had beena broadcaster and PR adviser, as well as a minister in various corners of the Church of England.

An invitation to join the TSA Board soon followed and I now find myself stepping into the shoes ofa transformational Chairman who will be a hard act to follow.

Philip, and his predecessor Chris Naylor, saw clearly that any person or organisation that wantsto flourish has to be open to change. The TSA had evolved voluntary structures that had served itwell, but it needed to provide a proper framework for its governance, management anddevelopment. Chris led the Board to commission a major review, leaving to Philip the task ofoverseeing its process and implementing its outcome. As a result, we have moved into a new era.Our hard-working and highly able CEO, Jayne Spink, now attends to all operational matters. Shehas greatly enhanced many aspects of our work. The Board oversees Jayne’s activity but gives itsprimary energy - with her - to vision, strategy, direction and policy. It is into this new world that Inow step as Chairman.

I believe that my principal task in this new environment is to keep alive the sense that the TSAremains a supportive family. Families get together, and so I shall be encouraging the creation ofnew regional groups so that members have more opportunity to meet each other and our TSCadvisers. We shall continue to make our annual family day as useful as possible. I shall alsoencourage gatherings where staff and trustees can share together. I’d like everyone closelyinvolved in taking the TSA forward to know each other, know what each is trying to do and addtheir insight, experience and talents wherever they can.

The TSA is a member organisation. All that we do is on your behalf and for the benefit of the TSCfamily – present and future. All staff and trustees are always delighted to hear your news, ideasand concerns. Tanya Darnton, our volunteer manager, would love to know of any talents or helpthat you would be prepared to offer other members through a regional group. I am alwayswilling to hear from members who would have something to offer the Board.

The most exciting thing about becoming Chairman at this time is the growing sense that we arenow getting much closer to having better ways of treating aspects of TSC. Our twin aims ofproviding support for today and a cure for tomorrow both have real traction. I look forward to theday when we will have even more to offer to those making that traumatic first phone call.

For now, I much look forward to getting to know you or getting to know you better. Thank you forbeing part of TSA and sharing our journey.

With best wishes

Martin Short Chairman

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Most families will recognise the powerof sibling bonds; the desire to do thesame as your brothers or sisters,

whatever the odds. For the family of MillieWood, aged 4 who has TSC, this siblingspirit has already resulted in some fabuloussupport for the TSA with more to come.

Millie’s mother, Vicky Wood, andher aunt, Charlotte Haskell,have both run the Londonmarathon and raisedfunds for the TSA,leaving only brother,Otto Ohlsson, tocomplete thetriumvirate.

Despite living an oceanapart from his much-lovedniece, Millie, Otto has risen tothe unspoken challenge and iscurrently in full training mode tocomplete this year’s Londonmarathon on April 13th, 2014.

For Otto this is a chance to add tothe already considerablecontribution his family have made tothe TSA, as well as a good excuse tovisit them all, and have some morefun with Millie. Otto said: “I lovespending time with Millie. I guessI’m just a kid at heart myself becauseI like to teach her all the things I’mnot supposed to do, like sticking outher tongue.”

Lead singer and guitarist of theindie rock band Into Arcadia, Ottosettled in Milwaukee, Wisconsin inthe USA almost nine years ago,when his career as a musicianbrought him to the city where hemet the friend with whom heformed the band. At present theband members are pursuingprojects independently and Ottoplans to start his solo albumon his return to the States afterthe marathon.

Otto keeps in touch with his family in the UK viaSkype and visits when possible but the distancecan still pose difficulties, particularly when the

family is facing challenging times such asthe discovery at three months of age thatMillie had TSC and all the uncertaintiesthat news brought. Otto said: “It was reallydifficult not to be there for my sister andher family while they were going through

all of that.”

As Otto supported hissisters with theirfundraising, includingarranging a benefitconcert with theband, so Vickyand Charlotteare passing ontips to Otto tohelp him create

and build hisjustgiving page

www.justgiving.com/otto-ohlsson. Fundraising from

people in the USA for an Englishcharity by running a marathon inLondon has not been easy butOtto is ploughing on andmaking good progress with thesupport of his wife, Brandis.

Although Otto has found thetraining tough, hindered byinjuries and the long, icy winterin Milwaukee, he has battled onand is now discovering thepersonal rewards of his strict dietand fitness regime. He said: “It’sbeen a very beneficial change.I’ve never felt better!”

With a simple goal ofcompleting the course, Otto hashis sights firmly set one specialmoment. He said: “To finallycross the finish line will be sorewarding after all the hard workit has taken to get there. I amreally looking forward to thatmoment.”In addition to the personalsense of achievement, Ottois also really thankful to be

able to do something forMillie, as he finds it hard to live so far away. Hesaid: “I love my family and running the marathonfor the TSA has made me feel closer to them.”

Letter from Otto in America

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By the time Uncle Otto runspast Buckingham Palace at

the London marathon this year,Millie Wood will be four years old.

Her TSC was spotted earlybecause she was havingmultiple epileptic seizures.Although drug treatment hascontrolled her epilepsy for themost part, she has sufferedoccasional prolonged seizuresthat have required emergencyadmission to hospital. Howeverbeing mainly seizure-free hasenabled Millie to develop wellboth physically and mentally.She has moved on from

mainstream nursery to pre-school where excellent help andsupport have meant that this shyand apprehensive little girl feelsat ease and is making greatprogress.

At home Millie’s favouriteactivities are drawing, jigsaws,books and playing with herpretend kitchen. A very lovingand caring girl, Millie enjoysspending time with her family,including helping out with hernew baby brother, Dylan.

Millie’s courage has helped herfamily cope with some of thetraumatic consequences ofTSC. Her mother Vicky said:“As new parents we werecompletely devastated,particularly on hearing thepotential effects of TSC andbelieved the future would bedifficult and challenging.Although we have experiencedMillie critically ill and indistressing situations, she hasalways bounced back bravely.”

Millie’s family, particularlyparents Vicky and Stephen,remain grateful for the supportof the TSA. Vicky recalls thedifference it made when theyfirst made contact with the TSAand received a quick and heart-warming response followed by aface to face visit from their TSCAdviser. She adds: “The website;research links; support groupsand fundraising is alsoincredible and has been anessential part of our lives.We know we are not alone.”

Millie

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Q1.Tell us aboutwhat you were

doing prior to joiningthe TSA. What haveyou enjoyed most in

your career todate?

Q2.Tell us about

your early career& what inspired youto take the path

you did?

Alison“I was working in the NHS in research management. I had beenin the NHSI feel. I got my greatest enjoyment working with clinicians and withhealth researchers.”

Moira“I had taken voluntary redundancy from a head of support andinformation/and Head of Partnerships and projects post with a national neuro-oncological charity which was based locally. I am a director of a start up inthe renewable energy sector so I could devote time to that as well as gettingto know my first grandson, Aaron, who was born in July. Last summer theweather was so wonderful I didn’t even have to make my usual trek out to theSierra Nevadas in Andalucía for a blast of heat – I just sat in the garden or wason the Thames.”

Alison“Being involved in research was always top of my agenda. Myfirst degree was in Sociology & Social Research. It was a great introductionto the field of research. During the course I spent six months on placementat City University, London working on the National Child DevelopmentStudy (NCDS) which is a cohort study following individuals born during aweek in 1958. Working in an academic environment on a large-scale studyfurther enhanced my interest in undertaking research as a career. I leftuniversity with an open mind to the area of research work in which I wantedto be employed. I was fortunate to secure employment in my home town inthe University of Leicester within an academic department of primary care.I stayed here for a couple of years as a contract researcher until I decidedto pursue a permanent role within the NHS. My first role within the NHS wasinitially geared around evaluation and supporting clinicians with researchwithin a community trust. However, I arrived within the NHS at a time when

Welcome to new staffMoira and Alison

In Martin Short’s words to TSAmembers on page two of thisedition of SCAN, he talks of

the importance of retaining thesense of the TSA as a supportivefamily where everyone knowseach other and what each istrying to do for the Association.With this in mind we would liketo introduce you to two newmembers of staff both of whomjoined the TSA at the start of

2014; Alison Cooper, Head of Research and Moira Dennison, Head ofSupport Services. Thanks to Alison and Moira for sharing a little of theirbackgrounds and hopes for their respective roles.

Alison Cooper Moira Dennison

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research was becoming much more of a managed enterprise in terms ofboth governance and finance. So a NHS research management careerfollowed within a variety of settings including community trusts, acommunity mental health trust, an acute hospital and a number of PrimaryCare Trusts (PCTs).”

Moira“I came back into the workforce when my son was two. Beforethen I’d been working in scientific publishing but took a job in the GreaterLondon Council in the last years of the administration – an amazing time towork in London. Then I moved on to working for a small charity in NorthEast London supporting people with autism. This involved developingservices and raising its profile. I then went to work for MENCAP for 13years, doing much the same but on a broader scale and, in some areas ofwork, at a national level. After that I established a region for a cancercharity covering half the UK and then ran a small charity in Oxfordshirebefore working nearer home in a neuro-logical/neuro-oncologicalcharity…..I’ve never sat down and thought about a career path but ratherI found a sector where I could make a difference and stayed there.”

Alison “The aspect of my career which has given me the greatestsatisfaction and I guess is my greatest achievement is playing a major role inthe setting up of the Leicestershire Primary Care Research Alliance. This wasin the days when PCTs were in their infancy and we didn’t have structuressuch as the NIHR and the associated research networks. We set up a neworganisation from scratch to manage and promote primary care research inLeicester, Leicestershire & Rutland. In setting up the Alliance I broughttogether stakeholders from both local NHS and academic institutions and wewere able to establish common goals for the direction of research locally. Thiswas successful in setting up management structures for primary careresearch and being the springboard for a number of research collaborations.Regrettably I had to leave this role which I had enjoyed so much, when wehad a family relocation to Hampshire. However the Alliance continuedsuccessfully and a number of features from the Alliance were realised in localnetworks and local NHS structures, with the advent of the NIHR and furtherchanges in PCT structures.”

Moira“Being part of the founding group that developed RESPOND. Thefirst, and, as far as I know, the only psycho-therapeutic counselling servicefor abuse survivors with a learning disability. This was back in the 1990’s. I’dbeen taking on abuse cases for both adults and children with learningdisabilities and had started to develop and deliver training. I was also doingwork with local authorities developing their policies and procedures, as wellas leading on investigations. However I knew there was a huge gap for theindividual in terms of support. So, with a few like minded people –most ofwhom are still close friends – we did something about it.”

Alison“As I hinted at earlier, I have witnessed many changes within theNHS during my career. I was working within a PCT as they were first set upand I was working in a PCT as they disappeared. So I found myself beingmade redundant from the NHS. Often redundancy makes one reevaluate one’scareer and I decided that I would like to utilise my transferable researchmanagement skills within a different sector. For me the charitable sectoroffered me that opportunity, and it’s where I felt I could make a difference. Interms of the TSA in particular, I felt it was a small organisation with very bigambitions in terms of its drive to find a cure for TSC. You only have to look atits website to see how very central research is to its business. The opportunityto work from home also appealed to me. For many people home-working isnot for them. However I am really enjoying it. It allows great opportunity foreffective working without a long commute. I am certainly not missing the dailybattle with the A34, M3 and M27 into Southampton!”

Q3.What has beenyour greatest

achievement in yourcareer to date?

Q4.What inspired

you to apply for yourposition at the TSA?

Welcome tonew staffMoira andAlison cont...

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Moira “I was looking for the opportunity to do what I’m good at – takingservices and seeing where I could get to. My background has been in startup, crisis and turn round management and the development of services. Andthat background means that I know how things go together and what worksand I’ve usually made all the mistakes already so can use what I learned fromthat.”

Alison“In my early weeks at the TSA, I have been made to feel reallywelcome. People are incredibly friendly and willing to help out from alldirections. Across staff, trustees and members there seems a strongcommunity working towards shared aims. In my role I will obviously work alot with the TS research community. Although I haven’t met everyone yet, I amstruck by the great relationship the TSA has with its researchers.”

Moira “My first impression is of a small charity very much punchingabove its weight.”

Alison“I am looking forward to working with all our researchers, andhelping deliver research that is so important to the TSA.”

Moira “I am looking forward to working in Northern Ireland and Wales– as these are geographic areas I’ve not been able to concentrate on inprevious jobs – and of course – meeting the membership!”

Alison“Internally, it is about justifying and judiciously using resourcesin terms of our research spend. It is also vital we make sure every penny spenton research is wisely deployed. Externally, it is about raising the profile ofTSC and rare disease research. It is about making sure it is higher up theagenda of the government and other research bodies and about accessingmore resources.”

Moira “We need to reach out to more people and into differentcommunities to ensure that everyone with a diagnosis finds out about us andhas access to the same high quality level of service no matter where they live.But we have to do this in a sustainable fashion so we need to get theinfrastructure right and look at where we can move from the operational – onthe 1-1 or group basis - to influencing and informing the strategic debate.”

Alison“Life in our household is usually quite hectic. My husband has ademanding job and we have two school age children that demand a lot ofattention. Our week nights and weekends seem to disappear in a blur of CubScouts, dance classes, football, rugby, taekwondo, swimming and cricket. Wehave a 20-month old Cockapoo called Winston which adds to the hecticnature of the house.”

Moira“I live on my own in a haunted Elizabethan cottage opposite agraveyard down a single track lane in The Chilterns. But all of my social lifeis in London – either the East End or Soho and I think this is going to be mylast year out in the sticks. Having spent the last 18 months living most of theweek back in London I’ve realized I miss it far too much. You can take thewoman out of the East End but you can’t take the East End out of the woman.”

Alison“Spent with my immediate family doing relaxing activities.”

Moira“Has to involve music – live or on vinyl – anything from rockabilly,psychobilly, ska, reggae through to early rock and roll – well the possibilities

Q5.What has been

your first impressionof the TSA?

Q6.What are you

looking forward tomost in your new role

at the TSA?

Q7.Looking

forward, what doyou predict will be

the main challenges forthe TSA in your area

in the next fewmonths & years?

Q8.And now a bit

about you, could youdescribe life in your

household?

Q9.Describe your

perfect weekend.


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---------------------------STOP PRESS-------------------We’re also pleased to welcome two new TSC AdvisorsKendra Rhodehousewho will be covering Cambridgeshire, Cheshire,Derbyshire, Herefordshire, Leicestershire, Lincolnshire, Midlands, Merseyside(shares with Christine Beal) Norfolk, Nottinghamshire, Shropshire,Staffordshire, Suffolk and Worcestershire

Kendra said: “I am thrilled to be joining the TSA Team. I live in Nottingham withmy husband and 2 little girls and am looking forward to using my experienceto provide a good, quality service to members of TSA”Email: [email protected]

Christine Beal, TSA Advisor for Co Durham, Cumbria, Durham, Lancashire,Manchester, Merseyside (shares with Kendra Rhodehouse), Northumberland,Tyne & Wear and Yorkshire.

Christine said:“I am already enjoying being part of the support team at theTSA. I live in a small village just outside Huddersfield and am looking forwardto supporting families in my region living with TSC”Email: [email protected]

Q10.What was your

favourite subject atschool and why?

Q12.What are your

hopes for society inthe future?

Q11.What do youwant for your

children when theygrow up?

are endless. And there is always The Clash. Then cocktails are a must – dirtyvodka martini, manhattan or sours. That will do me nicely and if there is F1or motorbike racing on a TV near me – well I wouldn’t complain.”

Alison“I really enjoyed Humanities. I used to enjoy the analytical natureof the subject and compiling reports and projects. I think it was the earlyresearcher in me! The teachers who took the subject also made it accessibleand enjoyable. Now with my own children, I can see the difference that good,inspirational teachers can make.”

Moira“History – my father left school when he was 11 in 1922. He hada very basic education to say the least – but he loved history and he passedthat love down to my brother and to me. When my brother wrote his first book– he dedicated it to Dad and talked about how the love of history had reallytaken hold for all of us. It was a lovely acknowledgement to someone whosadly had gone before they could read the words.”

Alison “Above all, I want what everyone wants their children – to behappy and healthy. I hope they are able to find something in life that bringsgreat fulfillment be it as part of a career, a hobby or interest or within theirfuture family life.”

Moira “We need to refocus our energy on saving the planet – usingsustainable fuels and technologies; learning to work collectively and collab-oratively and recognizing that the old world order has to change – bottomline – if we don’t save the planet – who will?”


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To live with TSC can be tolive in a nightmare thatnever seems to end. When

families receive a diagnosis theyare pitched into a desperategrief; for what they have lost, forwhat may never be and for whatterrible things might come.

For the majority who are badlyaffected there are days offrightening seizures; horridbehaviour; nights made grim byinsomnia and nocturnal seizuresthat keep families awakerushing to the bedside to makesure that this is not the seizurewhere our loved lost one sufferssevere damage or stopsbreathing. The rash and beingdifferent hurts those who areaware of it. Battered andexhausted, families and theirmuch-cherished child limpthrough childhood to

adolescence at which point newdangers (SEGA, kidneys, lungs)and new problems (severeanxiety, depression, spectacularadolescent blitzkrieg,occasionally psychosis) can sapthe joy and ability to cope.Some won’t make it through toadulthood and for those withTSC and their families who do, isit any wonder if some disengageand despair?

But we must never despairbecause there is hope – nowmore than ever before.New knowledge about whatgoes wrong, when and why canlead to earlier interventions thatmake a difference: for infantilespasms; for autism; for SEGA,kidney and lung problems.Better control of epilepsy cutsthe risk of SUDEP (suddenunexpected death in epilepsy).

Sirolimus and Everolimus, themTOR inhibitors, have been thebig news in the last eight yearsbut other simple things are alsocrucial. These includeVigabatrin, as soon as infantilespasms start; early recognitionof SEGA; newer anticonvulsants;a better understanding andways of dealing with AutismSpectrum Disorder, andstandard treatments for anxietyand depression. We know mTORinhibitors shrink SEGAs andAMLs in children as well asadults and they prevent AMLSbleeding. We know they improveskin rash in most people,epilepsy in many and behaviourproblems in some. We hope infuture we can show whether theywill prevent all the worst aspectsof TSC if given early enough.However, unless things changedrastically, none of this will be of

Can the NHS be the Magnificent Seven?By Dr Chris Kingswood, Head of ResearchStrategy for the TSA

When writing to any parliamentarian the address to use is: House of CommonsLondon SW1A 0AA. If you aren’t sure of who to write to you can find out by entering your post-codeinto the search facility at: www.writetothem.com

If you prefer to use e-mail you can send your letterthrough the facility on the ‘write to them’ website directlyto any of your local or national elected representatives.Don’t forget to mention the TSA in your letter. It would

also be great if you copied your letter to theTSA so we know which MPs have beenwritten to and the issues that you haveraised with them.

We’d also be grateful for sight of anyresponses you receive.

As always, if go to the TSA website to get intouch if you would like to share your story in

the media in order to influence provision forpeople with TSC and we can help you.

any use to the 90% of peoplewith TSC who never get to a TSCexpert. TSC clinics, run as theyare by a handful of enthusiasticvolunteers, have been brilliantat pushing forward the researchagenda but cannot deliver allthe services they would to thelucky 10% who manage to findthem. This is because servicesfor TSC are inadequatelyresourced and woefullyunderfunded.

Until now the NHS has beenblind to the hidden UKpopulation of 10,000 people withTSC and their families. It is amark of a humane society thatpeople unlucky enough to beborn with serious physical orpsychological disabilities orprogressive chronic diseases orindeed all three, are givencompassionate, holistic,systematic care. It is a tragedyand a disgrace that mostfamilies with TSC sufferignorance, misunderstandingand neglect that can lead to ahigh personal cost in physicaland psychological ill health, lossof ability to contribute to societyand loss of earning of at leastone parent. Families need

prudent pre-emptive treatmentnot expensive rescue therapy.This is what all our childrendeserve.

In the past we’ve lived with thereality that TSC was viewed astoo rare for care to be properlyfunded and too common tobenefit from the first wave ofresource dedicated to ultra rarediseases. But now the UKgovernment has signed up tothe EU promises for rarediseases and published its ownstrategy. The UK strategycontains over 50 commitmentswhich, provided they areimplemented and that TSC isrecognised as part of that work,will turn the tide for the better(www.gov.uk/government/publications/rare-diseases-strategy).

The NHS is a complexbureaucracy significantlyhampered by constant re-organisation which seems tooccur after every generalelection and every change ofhealth minister. By the time onere-organisation settles down –giving the well motivated andintelligent civil servants who runit a chance to do some real good

– the next re-organisationscrambles their efforts. It is amiracle and a tribute to theirdedication that they make anyprogress. There is a refreshingenthusiasm amongst the NHSnational commissioning board tohelp the TSC community. With the new Internationalguidelines and new treatments,the NHS has the capability tolead the world in showing how togive TSC families access to greatcare. Be of no doubt, we willhave to fight for our right to thebest care and we will needchampions, our Samurai, in theNHS to help us. Their weapons inthe fight for change will be theevidence we put forward tomake the case for change: Hardfacts and figures and personalstories.

For the sake of our children withTSC and for those yet to be bornthis is YOUR call to arms. Tellour story and tell it loudly. Writeto your parliamentarian. Askthem to get behind our call fornational TSC services. Let themknow the problems that you faceas a family and ask them to helpmake a difference. Share yourstory with the TSA or volunteeras a TSA media case study. Let’smake some noise. Let’s makethem listen.

Until now the NHS has been blind to the hiddenUK population of 10,000 people with TSC

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Timely diagnosis and treatment of any complications are key to ensuring the best possible outcomes forpeople with TSC. Not all healthcare professionals learn enough about TSC when they are training toenable them to recognise the condition. Even those who do know about the signs and symptoms of TSCare unlikely to have up-to-date knowledge about currently available treatments unless they are TSCspecialists.

In order to improve awareness of Tuberous Sclerosis,the TSA has partnered with BMJ-Learning to producean online training module. The module is designed toeducate GPs and other non-specialists about how torecognise TSC and about the treatments currentlyavailable.

The module is available for anyone to access and is free to complete. Users who successfully pass themodule will receive 1 Continuing Professional Development point and a certificate to print or download.Simply register for free at learning.bmj.com to access this module.

Feedback from professionals who have accessed this module has been really positive….“Well worth the time. Brilliant module.""Excellent. This has been enormously helpful for all of us, thank you.""I was surprised at how little I knew. Well worth taking this module""Haven't yet come across this in general practice but will be less likely to miss it now, especially theinfantile spasms"

Annual Conference 9th Nov 20132013’s TSA annual conference was held at the Hilton WarwickHotel on Saturday the 9th November. Workshop speakersincluded:Dr Richard Appleton- Epilepsy in children Professor Pamela Crawford- Epilepsy and TSC in AdultsDr Chris Kingswood- Kidneys and TSC (talk available to listen toon the website) Dr Finbar OCallaghan-Brain and TSC (talk available to listen to onthe website)

The new venue worked very well and in addition to thepresentations and workshops and a chance to catch up with oldfriends and new, there were fun activities for children and a rangeof stall-holders.

Date for your diary: 15th

November 2014 is thedate for this year’s AnnualConference which willtake place at a venue in theMidlands. We are nowworking on the programme and would really love members toget involved with their ideas. Please get in touch with MoiraDennison, Head of Support Services on 07930014322 [email protected]

TSA partners with BMJ Learning toeducate professionals about TSC.

'The children had a fun day too!

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VolunteeringAs 2014 is now in full swing, I wanted to let you know how Volunteering is shaping up and give you thedetails of the upcoming Support Group meetings that have already been arranged. We have had somevery good meetings already and I would like to thank everyone who has attended. We have a number of volunteer roles listed on our website and are still in need of volunteers to comeforward for the Regional Support Organiser roles, so if you are interested in running a group, pleasecontact [email protected] or apply through the website. I hope to get to meet many more of you in the next few months and continue to be astounded by yourcommitment and support… you are an inspiration! Tanya Darnton Volunteer Manager

WalesThe latest meetings were 4thDecember and 2nd March at theSpecial Needs Activity centre inPort Talbot. These were held ata weekend to make it easier forfamilies to attend. You can read anote of these meetings on ourwebsite.Next meeting at Special NeedsActivity Centre, Margram, PortTalbot SA13 2BL – 2nd March2014 11am-3pm (familieswelcome!)

Northern Ireland The initial meeting was held atThe Northern Ireland Councilfor Voluntary Action, Belfast onWednesday 29th January 2014.(For a note of the meeting seeour website). Next meeting June 2014 TBC(information day)

North EastA meeting was held atNeurosupport Centre, Liverpoolon 21st January (see meetingnotes on Website) Please join the group forinformal coffee mornings at theHoliday Inn, Liverpool at 10.30am on 8th May, 1st July, 4th Septand 4th November 2014. Contact

Liz Law on [email protected] meeting Neuro Support,Liverpool (May 14th) 11-2pmGuest speaker: Dr ChrisKingswood

West MidlandsMeeting held on the 11thFebruary from 11-2pm at avenue called INSIGHT HOUSE,DY5 3BL (See meeting notes onthe website)Next meeting Sept 2014 (TBC) –Information Session

Initial meetings will provide anopportunity to meet with otherlocal members and families, aswell as TSA staff and TSCadvisers, to discuss arranging aregular regional support group,on an ongoing basis. Discussionswill be around group activities,guest speakers, informationsessions and attracting newpeople into the group.

South West – TauntonTSC meeting booked for 25thMarch from 11-2pm atStaplegrove Village Hall, 214Staplegrove Road, Staplegrove,Taunton, TA2 6AL

South West - BristolMeeting booked for 10th Mayfrom 11-2pm at 23 Park Street ,BS16 1AZ

Berkshire Please join us for an initial meetingfrom 6.30 – 9pm, on 29th April, atSt. Andrew's Methodist Church,Merton Road, Slough. SL1 1QW (StAndrew's is located at the southend of The Grove in the centre ofSlough, approximately 2 minuteswalk from the High Street, 10minutes walk from the bus & railstations.) There is also a car park. North East - YorkMeeting booked for 15th March

from 11 -3pm at The ExhibitionHotel, Bootham, York YO30 7BWThere is a large pay and displaycar park right round the back –go down the side of Sainsbury’sLocal on Bootham to access thecar park. 10 minutes walk fromYork Station, two minutes fromYork Minster, so right in centreof York.

Scotland – Glasgow (all daytimings tbc)Volunteer and Support Groupmeeting on 19th May atVolunteer Glasgow, AbbeyHouse (1st Floor) 10 BothwellStreet, Glasgow, GY2 6LU

We will also be looking atadditional training opportunitiesin the afternoon on Self-directedsupport training.

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The month of May sees the return of our national campaign, Tea and Scones for TSC, andwe would love as many of you as possible to get involved. The campaign will run duringTSC Awareness Week (May 12-18) and we need individuals, schools, companies andcommunity groups to hold scone bake sales and afternoon tea parties to raise money forfamilies affected by TSC.We want to use this week to shout about TSC and the work of our charity. We need your help!

The week also includes TSC International Global Awareness Day, 15th May, where we’llbe contributing to ‘World Of Thanks’. We’ll be sharing notes of thanks from families,individuals, professionals and all those involved with TSC across the globe.

You can find out more about TSCi Global Awareness Day at:www.TSCGlobalDay.org

Schools FundraisingAsk your child’s school if theywill put a date in the diary w/c12th May for a Tea and Sconesfor TSC event. It could be asimple scone bake sale or if children bakescones that week as part of their DT curriculumactivity, they could ask family members for acontribution to the TSA when they take themhome for eating!

Work FundraisingTalk to your colleagues at workabout organising a Tea andScones for TSC event – tea andscones could be available for acontribution at a break time, oryou could go the whole hog and put on a fullcream tea.

Community GroupsIf you are part of a communitygroup such as a WI group orretirement group, please askthem to include a Tea and Sconesfor TSC event in their calendarfor May.

And Finally...Finally if you would like toorganise your own individualtea party, let your friends knowthat an invitation will becoming their way.

Here’s how you can helpwith fundraising

1Tea & Scones high tea party - ask forvoluntary donations

2Tea cocktails party with scrummy scone snacks - host a big night in with your pals and donate the money saved

3Host a Scone bake off with friends - ask for an entry fee and get prizes donated by local businesses

4Tea and Scones summer picnic games event - host a family fun day with people making a donation to participate

5Tea and savoury Scones work breakfast - sell your bake and tea to your colleagues for their breakfasts

Tea &Sconeseventideas:

Tea & Scones For TSC - #TeaandSCones12th-18th May 2014

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Here’s how youcan raiseawareness:We need the TS Community to help usshout about TSC and the work of ourcharity. Everyone can do something!

• Share Your Story – whether it’s living with TSC,telling local radio and newspapers aboutyour Tea and Scones fundraiser, or writing ablog about your experiences, we’ll help youat every step.

• Repost and Retweet – During the week we’llbe highlighting interesting articles, blogsand news about TS, all we ask you to do isshare that on your social media.

• Host collection tins - ask for us to send yousome of our collection tins and awarenessleaflets and put them in local shops andbusinesses.

• Tweet and Facebook us your photo’s andstories - Tweet us @UKTSA using#TeaandSCones or Facebook uswww.facebook.com/thetsauk

There willbe a prizefor the individual or groupwho holds their Tea andScones for TSC in the mostunusual place – half theway up a mountain; in aswimming pool; on the topdeck of a bus – just let yourimagination run riot and

remember to sendus a photo!

Get Involved Now• Download your fundraising pack online:

http://www.tuberous-sclerosis.org/tea-and-scones-fundraising

• Contact Emma for help organising yourevent or for equipment, 0114 270 1723 [email protected]

• Order your t-shirt or printed fundraisingpack from our online shop:http://www.tuberous-sclerosis.org/tsa_products

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Dr Chris Kingswood, TSATrustee with a specialinterest in research, takes

us through some of the aspects ofthe TSA’s refreshed strategy forresearch. The start of 2014 heralded somesignificant changes to myprofessional life as I moved fromworking full time in nephrology(kidneys) in the NHS shortly afterChristmas. I am moving towardsa balance where 50% of my timeis devoted to research (Mainly inTSC) and the remaining half toclinical work in nephrology butmainly with patients with TSC-related kidney problems,especially through the TSCSpecialist Clinics in London andBrighton.

The idea is that this will give methe opportunity to continue withmy existing clinical researchinterests as well as focusing onnew strands within the newlyrefreshed TSA Research Strategy.

Given the dearth of government-funded TSC research in the UKand the opportunities to build onthe medical advances andworldwide collaborative effortsto which TSA funding has alreadycontributed, it is absolutely vitalthat the TSA targets its researchspend effectively. Our strategyfocuses on understanding TSCand its impacts and treating andpreventing manifestations of TSC.It contains quite a significant shiftin vision – more of this in the nextedition of SCAN - andencouragingly there is atremendous amount of workalready in place which iscurrently building to help usachieve our objectives.

The first oftheseobjectives isto increaseour level ofinvestment inTSC research.

This will be targeted towardsencouraging new researchersinto the field and supportingsuccessful research centres withthe aim of investing £300,000 perannum in TSC research by 2018.

Secondly we want to raise theprofile of TSC research throughcollaborating effectively to unitethe different work in TSCresearch across the globe andestablish the UK as a EuropeanCentre of Excellence for TSCresearch.

Finally and importantly we wanta greater focus on enablingpeople affected by TSC tounderstand, shape andparticipate in TSC researchprojects from raising funds, andestablishing the agenda to takingpart as clinical subjects. I want to encourage members byrunning through how much isalready going on, here andacross the world to find answersand solutions for people withTSC under the strategic themes

on which we are focusing ourresearch funding i.e.Understanding TSC and itsimpacts and Treating andpreventing the manifestations ofTSC.

1.Understanding TSC and itsimpactsThere is already lot of progress insetting up a UK database of thenatural history of TSC andpatients outcomes andprognoses. For example aregister of patients with renalproblems has been developingfor a while and now has enoughdata to be able to report someinitial findings at a forthcomingEuropean research meeting –

European Association of Urology– this spring.

A pharmaceutical company,Novartis, is sponsoring a studywhich looks at anonymised GPand some hospital records fromwilling patients (currently around8% of the UK population hassigned up to this scheme). This

will help us learn how often andabout what people with TSC aregoing to see their GP and whatresults from these visits in termsof referrals and hospitaladmissions as well as emergencyhospital admissions.

We suspect there remains a lot ofunder diagnosis and insufficientreferrals to specialist care forpeople with TSC but this will helpus understand the big picturemuch better.

TOSCA (Tuberous SclerosisRegistry to Increase DiseaseAwareness). now involves over2,500 people with TSC across the

2014 and beyond… a refresh of the

...it is absolutely vital that the TSA targetsits research spend effectively...

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world, around 50 of whom arefrom the UK, and has a sub studywhich is looking at quality of lifeaspects of living with TSC. Thereis funding to continue gatheringdata through this study.

Next is our aim to get evidencethrough social and serviceresearch to show where peoplewith TSC have unmet needs andwhat resources should betargeted to help them. The TSAnow fund two researchfellowships which focus onautism and ADHD issues inchildren with TSC.

Thirdly most of the TSA’s currentresearch grants are awarded toresearch centres such as Cardiffwhich are looking at themolecular genetics to help usunderstand more about why andhow TSC genes mutate.

2. Treating and preventing themanifestations of TSC.When it comes to looking atepilepsy and anticonvulsant drugtrials there are drug trials atadvanced stages such as EXIST 3which is running around theworld and about to start in theUK. This is looking at the effectsof the mTOR inhibitor everolimuson seizures in people with TSC.Overall we now have a lot ofevidence, as outlined in the TSA’sguidelines for healthprofessionals, to show how theseand other drugs work in patientswith TSC and so our focus mustnow be to encourage thoseneurologists who understandabout TSC to spread thisknowledge to otherprofessionals. This is such anexciting area where we believeearlier treatment for infantilespasms can have a tremendouslypositive effect and it isencouraging to see how thenumber of people with TSC whodie unexpectedly throughepilepsy is reducing which

shows how much better wealready are at controllingepilepsy. Studies such as TRON in Cardiffare working towards greaterunderstanding of neuropsycho-logical or psychiatric problemsincluding alleviating autisticbehaviours and generallyhelping the brain function ofpeople with TSC.

When it comes to treating kidneyand lung problems we havedrugs with licences which weknow work but the difficulty isgetting funding to prescribethem for patients, particularlythose with kidney problems.Members’ help in battling thesefunding issues will play a vitalpart in breaking down thesebarriers.

I am really keen to get someresearch into treatment of skintumours through mTOR creamsoff the ground and this is a keyfocus for this year. Unfortunatelyit is expensive to make up thesecreams and there is no specificlicence for treatment in this waywhich means doctors cannotprescribe them as a matter ofcourse to patients. Our plan is toset up a study in the UK whichwill have the dual benefit ofallowing some people to getinstant access to the treatment bybeing involved in the trial andalso add to the body of evidencealready established throughtrials in Europe whichdemonstrates how this can help

TSC-related skin tumours.

Finally a key priority is to set upmore studies to show howtreating TSC early can really helppeople in the long term. It isclear that if we block the mTORpathways (using mTOR inhibitordrugs) in very young babies thiswould go a long way to cuttingout around 90% of the unpleasantsymptoms which come with TSC.However the problem is thatsame pathway is used forgrowing healthy cells whichbabies need to develop so it isimportant to get exactly the rightdose. It needs to be large enoughto impact the TSC cells but not solarge that it stops normal cellsfrom growing. mTOR inhibitorshave now been used for aroundeight years in patients of all ages,

including very young babies andso we have an increasing amountof information on how they workin practice.

Following on from this I leave youwith a taster for the future whenwe will introduce to membersour vision to set up an excitingmajor study into the impact ofintervening in early childhoodwith drugs such as mTORinhibitors. Details will followshortly and this part of ourstrategy will be officiallylaunched at the researchconference we are planning for2015. Watch this space!

Dr Chris Kingswood

TSA’s Research Strategy

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Marathon Gallery

Rob Page is finding his training isnow paying off as the distances seem tobe getting easier. He feels privileged tohelp support the TSA having witnessedthe huge effort and personal sacrificehis friends Dave, Jo and their childrenunderwent when their latest son Jackwas diagnosed with TSC. Rob isdelighted the funds raised will go intosupport and research to help familieslike theirs and will be using connectionsat work with Kier and Severn TrentWater and from his personal life inHinckley, such as his daughter’s cubscout group to help boost his efforts.

Otto Ohlssonhas a beautiful three-year-old niece, Millie who has TSC. When Millie’smum Vicky Wood and her aunt, CharlotteHaskell, Otto’s other sister, ran the LondonMarathon a year ago, Otto found himself the onlysibling remaining not to have run the LondonMarathon for Millie and for the TSA. The gauntletwas down! Otto, who is the lead singer in a bandcalled Into Arcadia based in the USA, is planningto complete the set this April, making full use ofhis connections with local media in Milwaukeeas well as social media and friends to raise morefunds for the TSA. See story on Page 4.www.justgiving.com/otto-ohlsson

Patrick and his family is also the inspiration forSarah MacDonald. Sarah reports that training isgoing really well as she is diligently following agreat programme. Despite the time it takes and theinevitable exhaustion, Sarah is really enjoying therunning, discovering new parts of London andfeeling fitter than ever before!

She is delighted to be running for TSA having beeninspired by her very good friends Helen and StewartMiller and their beautiful son Patrick. Havingknown Helen and Stewart since they were 18, Sarahhas always been inspired by them as friends notleast the way they have dealt with the impact of TSC

on their lives. Sarah is thrilled to have this opportunity to support herfriends and other families with TSC and very proud to be running themarathon for the TSA, the organisation that supports them in such apractical way.

Stewart Miller.Fresh from raising£2,000when he completed the DurtyTriathlon in July 2013, Stewart Miller hasnow set his sights on the 2014 LondonMarathon. Stewart in inspired, as always,by his son, Patrick who has TSC.

Adam Pothecary is running theVLM for his sister-in-law, Amber, who hasTSC. He has already raised over £1,100for the TSA by taking part in 4 marathonsin 4 years! Pictured here Adam is runninga warm up race and Longleat House.Go Adam!

Dave Deely“Back in 2009 we had thedevastating diagnosis for our son Jack that he hadTuberous Sclerosis. My family and I went through the‘Why Jack?’ and ‘Why us?’ stages and with the help ofthe TSA we came through to the stage of acceptanceand what can we do to make things better. LastOctober I was lucky enough to get a second ballotplace for the VLM and remembering a conversationwith my friend Rob Page 12 months earlier, Iconvinced him that running 26 miles was a really funway to raise funds for the TSA and raise awareness of agreat charity. I had clearly forgotten how much it hurtlast time!.” Pictured here is Dave with the childrenfrom local charity Smile, who benefitted from hisfundraising in 2012.

Marc Evans.“I have been inspired to run againand raise awareness and funds for the TSA, as Trystanthe young adult that I work with, was diagnosed withTSC when he was 8 months old and faces significantdaily challenges due to TSC causing tumours in vitalorgans, epilepsy, autism and a host of associated healthproblems. With 10 babies a month born in the UK withTSC, I know the TSA provides a lifeline to families suchas Trystan’s. I‘m also encouraged that here in WalesResearchers at the Institute of Medical Genetics atCardiff University have a long-standing record insignificant TSC Research Developments. My training isgoing well with a 20.5miles run already under the belt!It will be well worth it and all for a great charity andraising awareness for TSA!!” To support Marc, visitVirgin MoneyGiving and search for fundraiser MarcEvans. Make sure you it's the fundraising page attachedto the TSA!

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Hosted by the Rotary Clubof Woodstock & Kidlington, theBlenheim Palace Fun Run was ahuge success this year raisingover £1,500 for the TSA. Are youin touch with your local Rotary?Why not nominate the TSA?

Big thumbs up to our friendMartyn Ouston, who raised £300 byselling his boat and donating theproceeds to the TSA. Here Martyn ispictured with his nephew, WilliamMurch, who has TS raised €501, andwe’re very grateful.

Pictured here are RhysMallinson, who has TSC, Mum,Joanne Parrott, Granddad, Dave andGrandmother, Debbiewith clubCaptain, John Titleywho chose theTSA to benefit from North Cliff GolfClub raising £2,425.

The TSA would like to wish CraigWilliams a very happy 30th Birthday.Craig, who was diagnosed with TS at6months old, collected donations forthe TSA instead of presents andraised £400. Pictured here with hisbrother Charlie and friend Anthony.

Janet was over the moonmeeting the fellows at OsterleyLodge, especially when theypresented a cheque for £2,058.That will make a huge differenceto our work!

Big cheer for the ChilwellRainbows, a small activity group ofgirls aged 5-7years, who raised £150for the TSA encouraged by theirleader, a good friend of LindaMorleywhose grandson has TSC.Pictured here, the group had a talkon TSC, collected gifts for a tombolaand raffle, and encouraged homebaking for a tea and cake evening.

Huge thanks to Great LeighsPrimary School for raising£480 from a delicious chocolateday fundraiser. Pictured herewith his mum Rosella, sisterDemi& friends of the school, isCarsonwho has TS.

As always our fundraisers have been ‘going the extra mile’ for the TSA, here’s a run down ofpeople we all owe a big THANKS to, and a little update from our Christmas activities.

Christmas, wrapped up with a bow on top. Over the festivities the TSA tried some newinitiatives to make the gift of giving to the TSA easier and helpful to our community. And, youwere generous and supportive indeed. Here are the numbers:• We sold 613packs of Christmas cards, which made £3,202profit for the TSA• TSA Gifts & our e-card designed by Lauren McWhinnie, & donations attached to purchases raised £1,387If you want to help us by selling left over Christmas cards, please contact Emma, 0114 270 1723

Fundraisers’ GalleryTSA Awareness Week 13th -19th May

Check out Joseph Dicks, withTrustee Nick Dale. A year 10student at Barlby School who tookpart in a triathlon for his Duke ofEdinburgh Award and raised £100for the TSA. Cheers Joseph!

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We’ve just been told we’vebeen chosen as one of thecharities of the year for SoftCat,software and IT providers,which we think is super cool.Thanks to Tom Stafford fornominating us. Want to find outhow we could partner withyour workplace? Get in touch.

More thanks:• Graham and Liz Harker have supported the TSA over many years.We’d like to thank Graham for raising £1,158 at his recentbirthday party

• For the second year running, Vikki Hammond hosted a psychicnight raising over £2000 for the TSA

• Big thanks to Kay Poulton and her Cotswold Super Sprint efforts,raising £1,309 for the TSA

• Thanks to Partnership of Care for a year of fundraising for theTSA, raising an incredible £3,238

• Over the last four months Amy Butler has raised over £900 for theTSA, running 5k’s and organising raffles. Well done Amy!

• Freya Davey raised £1,857 by taking part in the Dart 10k –superstar!

Feeling Inspired?Well you can join the TSA fundraising family through:

Ride London – Surrey 100 10th August 2014, we have 9 places on the TSA team

Great North Run 7th September 2014, we have 7 spaces on the TSA team

Big Fun Run 5ks various dates and locations across the country www.bigfunrun.com

Tea & Scones for TSC campaign, 12th – 18th May,

In the Next edition...With a theme of Volunteering and Localism our next edition will showcase initiatives in volunteeringfor the TSA and promote opportunities for others keen to join in.

We’d like to thankand honour all of

those families thatgive a donation inmemory of a lovedone. It’s a gift that

has such a positiveimpact on families

affected by TSC.

In memory of MaxJames, Trystan’sGrandfather, who

was an activesupporter of the

TSA, raising fundsand awareness

over many years.

In memory ofKathleen Wood,

Grandma toLauren, now 17years, who has

TSC. The pair arepictured here

together.

In loving memoryof Joan Bourne,

loving Grandma toNicholas with TSC,and loved mum to

Janet O'Neill

In Memoriam

Title Forename Surname

Address

Telephone

MobileStaying for dinner? Yes No

Email

Postcode

Title Forename Surname

Address

Telephone

MobileStaying for dinner? Yes No

Would you like us to contact you for advice about finding a hotel? Yes No

Email

Postcode

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Saturday 17th May 2014Friends’ Meeting House, 6 Mount Street Manchester M2 5NS.Book now for the Outlook Group gathering for adults who are mildly affected by TSC. All are welcome,whether longstanding members or new to the group. Carers, if needed, are also welcome. For those whocan stay on into the early evening, there will be the opportunity to go out together for a meal to which theTSA will contribute £15 per person. Those who wish to stay the night in Manchester are welcome to do soat their own risk and at their own expense. If you would like advice on finding a hotel please indicate so onthe booking form.

09.30 Arrival: A breakfast of croissants and coffee/tea will be served10.00 Icebreaker and Introductions10.30 Where the TSA is going and why – Jayne Spink, Chief Executive 11.00 Break – with hot drinks11.15 Mindfulness - Your chance to experience this effective relaxation technique 13.15 LUNCH – a cold buffet lunch will be served14.15 Interactive session on the future of the Outlook – Lead by Martin Short: Chair15.30 BREAK – with hot drinks15.50 What next for Outlook?16.30 End of meeting

To book your free place please write clearly and return this completed form to: Outlook, Tuberous Sclerosis Association, CAN Mezzanine, 32-36 Loman Street, Southwark, London, SE1 0EH.

If you will be accompanied by a carer please complete their details below:

Outlook Consultation & Support Day

The event is FREE toattend.Booking closes on

30th April 2014.

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A New Address for the TSATuberous Sclerosis AssociationCAN Mezzanine32-36 Loman Street Southwark London, SE1 0EH

As an organisation made up entirely of home-based staff the TSA has, for anumber of years, relied on various and changing PO Boxes for donations and other post.

We have found that our reliance on PO Boxes can cause significant problems,for example when staff are ill or leave the organisation.

It has also necessitated “double handling” of mail with post being redirected or passed byhand between staff members. We have therefore taken a decision to bring an end to the useof PO Boxes and to provide for a single central address for all TSA mail, including donations.

In February we signed a low-cost and flexible tenancy agreement with a well-establishedsocial enterprise to rent a single desk in shared and fully serviced premises alongside anumber of other small charities. As part of our tenancy agreement we will enjoy free use ofmeeting, board and conference rooms. Importantly, the post-room and franking machine willallow us to collect all TSA mail and deal with it on-site; centrally logging receipt, preparingdonations and then banking them the same day locally, scanning and forwarding mail toindividuals where personal responses are needed.

As we will be able to phase out our PO Boxes, save on redirects and the cost of bookingmeeting rooms in London for Board, committee, staff and other meetings we anticipate that wewill make a considerable saving on our running costs as a result of taking up this tenancy.

If you need to contact the TSA then please go to our website page www.tuberous-sclerosis.org/staff.html for a list of staff contact details or a general enquiry form or write tothe new address above.

Important Announcement

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Ride London-Surrey 100 - 10th August 2014.Join the TSA Ride London team on this once-in-a-lifetime televised event. Created as a legacy race forthe London 2012 games, you will take in the 100 mileOlympic route on closed roads through the country’scapital and beautiful Surrey countryside. Join us, call0114 270 1723 or email [email protected]

We’ve moved to one address!

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Our TSC Advisers are part time,covering a large geographical area.Depending on the situation we’re

asked to help with, our face to face supportmay not always be possible because of ourdistance away from you.

If you call, please do leave a message asyour adviser could be attending a meetingor supporting someone affected by TSC. Aswe’re not based in a central office, it willonly be your adviser who hears yourmessage.

Our help can include:

• Listening to you and finding out how TSCaffects you and your family

• Looking at ways of managing your care

• Providing support to help you andprofessionals coordinate care for you orthe person with TSC that you care for

• Providing information about TSC

• Suggesting other helpful organisations andservices

• Providing TSC Awareness training,education and information for health,social care and education professionals

For your general enquiries please go to theContacts page on our website:www.tuberous-sclerosis.org/contact-us.html

Jayne Spinkis the Chief Executiveof the TuberousSclerosis Association.

[email protected] 690 2288

Your contacts at the TSA

Support Services

FundraisingEmma Damian-Grint CommunityFundraising & Digital CommunicationsManager is your contact for information oncommunity fundraising, sponsoredchallenges and social media.Emma is normally in the office Tues - Thurs


Tanya DarntonVolunteer Manager


IMPORTANTPlease note our address if you are sending in a donation cheque,or a cheque from your fundraising event or activity: EmmaDamien-Grint, Tuberous Sclerosis Association, CAN Mezzanine,32-36 Loman Street. Southwark, London, SE1 0EH.

Maureen Tossi covers Greater London,South East and South West England.Maureen is normally in the office Mon - Thurs


Lynn Shields covers Scotland.Lynn is normally in the office Tues - Fri

PO Box 8728, Airdrie, Scotland ML6 [email protected] 608 257 - 07510 595 968

Kendra Rhodehouse covers Midlands,Suffolk and Hereford.Kendra is normally in the office Tues - Thurs

[email protected] 384260

Christine Beal covers Yorkshire, Cumbria,Durham and Northumberland. Christine is normally in the office Mon - Weds


Moira DennisonHead of Develoment Support ServicesMoira is normally in the office Mon - Thurs

[email protected] / 01442832438

ResearchVolunteering Alison Cooper

Head of Research is your contact forinformation on community fundraising,sponsored challenges and social media.Alison works Mon - Thurs.


Tuberous Sclerosis Association is a Company Limited by Guarantee Registered in Englandand Wales No. 2900107. English Registered Charity Number 1039549. Scottish RegisteredCharity No. SC042780. Registered Office: Abertawe House, Ystrad Road, Fforestfach,Swansea, SA5 4JB

TSA SCAN Magazine Spring 2014

Documents

Transcript of TSA SCAN Magazine Spring 2014