Festive Special 2013Christmas Appeal

Scottish Get TogetherMeet Tanya

Fundraiser’s GalleryNew Research Investments

...and more

The Magazine of the TSAmagazineUK

Edition 103 - Winter 2013

P2

Colour coded articles in this issue are:

Editorial Fundraising Research Support

In this Christmas issue of Scan Magazine

Isobel McFarlaneWhilst most of us only start to think about Christmas when thenights draw in and the temperatures drop, Janet and Emma, in theTSA’s fundraising team, have been planning for Christmas 2013 forseveral months now. In this edition you can read their ideas andtips for festive fundraising this year. Why not give it a go and helpto make their hard work pay off?

In this exciting era of research into TSC, the TSA’s ResearchCommittee has had some serious deliberations about the best way to invest the TSA’s fundsin this area. New chair of the Research Committee, Perry James, takes us through their futureplans. Also, Dr Lucy Wilde introduces the new focus of her research into challengingbehaviour in children with TSC.

Our fundraisers certainly made good use of the lovely summer weather we had this year asyou will see from the smiling faces plastered over our Fundraisers’ Gallery – even thepeople covered in mud are smiling!Finally we’ve highlighted some new information now available on our website which maybe of interest to you.Merry Christmas and a Happy New Year.

With best wishes

Isobel McFarlaneEditor, SCAN Isobel.mcfarlane@tuberous-sclerosis.org

A message from our Editor

P03. Christmas Fundraising ideas

P07. News from the Scottish Get Together 2013

P08. Meet our new Volunteer Manager

P10. Fundraisers’ Gallery

P12. Breaking New Ground – report on TSA’s new Researchinvestments

P13. Study into Challenging Behaviour in Children with TSC

P14. Preview of next edition of SCAN and useful informationfrom the website

P15. Staff contact details

Christmas Cards

P3

Christmas Appeal 2013We’ve got Christmas gifts wrapped up this year, so join us for Tinsel and Crackers forTSC. A card range to make your nearest and dearest sparkle; charitable gifts to beataway those ‘what should I buy them?’ blues; and an adorable e-card to send to warmup those chilly nights. Best of all, you can find all these delights….ONLINE. I know,crackers isn’t it?

So grab the chocolates that won’t make it to Christmas day, snuggle down with abrew and take a tour of the TSA at Christmas 2013.

Ordering detailsOnlineVisit us at www.tuberous-sclerosis.organd click on ‘Online Shop’

Ring0114 270 1723 to place an order overthe phone (all major credit and debitcards accepted)

EmailEmail Emma for a brochureemma.damian-grint@tuberous-sclerosis.org

Reindeer PostSend your brochure order form withselections and cheque to TuberousSclerosis Association, PO Box 4923,Sheffield, S2 9EU

From Clockwise:Robin Redbreast

Berries In The SnowWinter VillageThe Nativity

Madonne & ChildPretty Deer

All cards come in packs of 10 with envelopes and cost £3.99The message inside reads: “With Best Wishes for Christmas and the New Year”

P4

Christmas Gifts

E-Card Download

How would you feel if you knewthat a family would receive anhour’s telephone support whenthey needed it most? Or that yourgift could see a breakthrough inour fight against TSC? Well, ifyou’d like to give a gift with thefeel good factor this year, pleaseconsider our charity gifts.

You’ll receive:• A letter to the recipient tellingthem of your gift to them,including any personal messageyou may have, explaining thecondition and the work of ourcharity• A metal TSA pin badge• A hand written Christmas cardfrom the TSA

There are two giftsavailable:

£15 gift could provideone hour’s telephonesupport to a familywith a recent diagnosisof TSC

£30 gift could fund amedicalresearcher for one hourin one of our labs

All gifts can be posted directly to the recipient of thegift or the purchaser.

Gift items are given as an example ofwhat the funds could buy for our charity,and are not restricted to be spent in thisway.

Now isn’t this apicture withfestive cheer?

We had a competition in thesummer holidays for under16’s to draw a picture that wecould be use for our first everChristmas e-card. This entry

came in from LaurenMcWhinnie, aged 14, who hasTSC and she is our winner…

..Well done Lauren!

You can now download the e-card from the website andsend to all your pals and allwe ask is that you make adonation to our Christmas

Appeal.

Simple.

P5

Christmas PosterIf you want to savesome trees butstill want tospread Christmasgoodwill, we’vegot our “Tinseland Crackers forTSC” posters.

Hang it up at thecoffee machine atwork and friendsand colleaguescan leave theirholiday messagesand make adonation.

Or you could askyour child’steacher to put itup in theclassroom.

Delivered free toyour door, itcouldn’t beeasier to raiseawareness andvital funds forTSC.

Get in touch with Emma to receive your poster,(specifying whether you would like a “work” poster or a “school” poster)

Call on 0114 270 1723 or Email emma.damian-grint@tuberous-sclerosis.org

Instead of sending cards to yourclassmates, donate £2 to the TSA andwrite a festive message to everyone inone of the crackers below.

The Tuberous Sclerosis Association supports those affected by Tuberous Sclerosis

Complex and their families. To find out more visit www.tuberous-sclerosis.org.Tuberous Sclerosis Association

&TinSel CrackersniinT

leelSnnS

&l

&&

arraCCr

ekkeccka

srrser

niinT

leelSnnS

&l

&

arraCCr

ekkeccka

srrseer

lpmmpoCTheTubu

nf

affarirehtdnaxelberousScleroros

sisorelcSsuorebuT

noitamaroffonierreomroFFogeRhsittocS945

9301

ubwwwwargi an

dniffioTTo.seilimaamsisAsAssociation

noitaaticossA

orroelcs-suorroebut.ww.ww:otoggon 87240CS.oNytirahCderreetsig LynnyapmmpoCasi

Abffgi ginarmiLi

itsivvierreomtuodnsupupports thos

gro.siso atrebA:eciffifOderreetsigeR.08 tsigeReetnntarauGybbydetimiL

En

uorroebuubt.ww.wwwwwwtseaffffefectedbbyT

tserreoffoFFf,dRdarratsY,esuoHewweaaw oNselaWWa&dnndalgglnEniderreet

sargi

ro.sisorelccls-suTububerorousSclcler

BJ44J5AA5SaesnawwaSSw,hcaffat tirahCderreetsigeR7010092.o

t

.grrgrorosis

.oNyt

P6

Online Shopping

Advent Calendar

With wintery nights, snow (probably!) and outlets jam-packedwith Christmas shoppers you’d be forgiven for thinking onlineshopping was the way to go this year!

With Everyclick and the Giving Machine you use their searchengine to direct you to your best loved shops and, for everypurchase you make, the TSA will receive a donation from the company.

It’s safe, super easy and costs you nothing.

Please think of us when you’re buying presents for thepeople you love this Christmas time.

Confused?Ring Emma if you’d like to talk this through0114 270 1723

This year we’ll be having our own online Advent Calendar,and in the 25 days run up to Christmas we’ll be revealing afact or story about TSC on our Facebook and Twitteraccount.

Want to help spread the message of TSC?Join us on Facebook and Twitter and repost our day’s news.

Insert Twitter (with handle @UKTSA) and Facebook(www.facebook.com/thetsauk)

1

5

10

152025

P7

News from theThis year’s Scottish Get Together tookplace on Saturday 31st August at TheRenfield Centre in Glasgow. The day-long gathering was devised to addressfeedback and queries received frommembers during the year and to helpclarify the scene following manychanges to the health and social careagenda in Scotland.

Proceedings kicked off at 10.30 a.m. with awelcome session; a drink and a chance forthe group of around 40 members, staff andspeakers to mingle.

The first to speak was Dr S Joss, ConsultantClinical Geneticist, from the NHS TuberousSclerosis Clinic in Glasgow, who providedthe latest information on the Clinic’sdevelopment plans and answered avariety of questions from the group. Shealso spoke about how to get involved withthe Tron research study.

Natalie Frankish is the DevelopmentOfficer for Scotland from Genetic AllianceUK. Natalie provided all the latestinformation from the Genetic Alliance,including their new Navigating the MazeProject, which aims to support patients andpatient groups to take an active role intheir healthcare and enable people toinfluence the healthcare provision thatthey receive. Natalie also talked about thenew Cross Party Group on Rare Diseasesin Scotland and the future plans of theGroup to try to influence positive change.The TSA are delighted to be part of thisGroup and look forward to our continuedpartnership work.

After a break for a buffet lunch the group heard from Maggie Farrellwho is National

Training Co-ordinator for Self-directedSupport, Princess Royal Trust for Carers inScotland. Maggie gave invaluable andthought provoking information on thissubject and clarified some of the myths foreveryone. A copy of Directing Your OwnSupport is available on the Self-DirectedSupport Scotland website www.selfdirect-edsupportscotland.org.uk

The final session of the day, which closedat 4pm, was a chance for staff, EmmaDamian-Grint and Lynn Shields to thankthe speakers personally, who gave sofreely of their time and to everyone fortheir continued support. After that thegroup was asked to complete evaluationforms to assist with planning for futureevents. Vicky Mason also seized the opportunityfor some fundraising by running herannual tombola which, along with otherdonations, raised more than £250 on theday. Judging by the responses on Facebook agood time was had by all.

“What a great day it was, thanks to LynnShields and Emma.”

Please note this year’s Annual Conference is going live; follow our Twitter feedand Facebook page for up to the minute news from our conference. #tsacon

Tanya Darnton is someone who likes a challenge. She ishighly motivated and very active. This is welldemonstrated when you ask her about her home life andhobbies. Tanya lives in Hampshire where she is marriedwith two children. She plays the clarinet, is a qualifiedswimming teacher, a beautician and also enjoys running.With so much energy and so many talents of her own,Tanya is well-placed to inspire and bring out the talents of others.

Experience and expertiseWith years of experience running volunteerprogrammes at all levels for the Princes’ Trust, Tanyawas attracted to the new post of Volunteer Manager forthe TSA and has recently joined the team. She islooking to recruit willing individuals from within theTSA community and beyond to see how they mightsupport our work and make it available to as manypeople as possible.

Tanya will be utilising the experience she gained at thePrinces Trust where over 7,000 volunteers were inplace to assist vulnerable or troubled young people.Most recently Tanya was Programme Manager forVolunteers for the South East of England managing ateam of seven Volunteer Managers, who each lookedafter around 150 volunteers. Tanya had previously hadthe more ‘hand-on’ role of a Volunteer Manager forHampshire where she organised advertising ofvolunteer roles, recruitment and training and matchedyoung people with a suitable volunteer supporter on aone-to-one basis.

New ChallengesThe systems and processes needed to effectivelymanage large numbers of volunteers were already wellestablished within the Princes’ Trust although the scaleof Tanya’s remit there still sounds daunting. One of thethings Tanya is relishing most with her post at the TSA isthe challenge of establishing new systems from scratch.Tanya will be researching what is needed; devisingschemes and establishing formal processes which willhelp the TSA capitalise on the skills and time availablethrough volunteer support.

Tanya said: “Our ultimate aim is to establish a networkof volunteers with the right experience to perform arange of different roles. Some might support staff in theirjobs, for example through help with administration, ordirectly support families. Other people might help theorganisation to grow while another group helps spreadthe word and raise awareness and funds.”

So where will all these people come from? Well Tanyadoesn’t see this as her greatest priority at present asshe is confident that, as well as being able to attract

new people to volunteer to help the TSA, there will beplenty of support from people already within itscommunity; such as people affected by TSC; familymembers; friends, colleagues and professionals.

She said: “At the moment what I am focusing on isdetermining what volunteer resource is needed to furthersupport those with TSC and grow more awareness.”

Watch out for TanyaTanya is looking forward to meeting some membersface to face and has convened a special meeting ofmembers, trustees and staff to discuss what they see asthe priorities for volunteering support to help with.There will also be a chance for more people to chat toTanya at the Annual Conference (#tsacon) where she ishoping to gain a greater understanding of the issuespeople face when affected by TSC. Tanya is invitingpeople to come and talk to her and will have asuggestion box available for thoughts on volunteeringor expressions of interest in how individuals might liketo help.

In the coming weeks Tanya plans to attend a TSCSpecialist Clinic and a regional support group. Thisimportant phase of research, building on the feedbackmembers gave in the recent Membership Survey, isvital for Tanya define the volunteer roles needed.

After determining exactly what volunteering can bringto the TSA, Tanya will establish recruitment, inductionand management systems and programmes for eachstrand

She said: “We could easily recruit hundreds of volunteersand lose them just as quickly without ensuring that theirroles are appropriate and that they understand andempathise with the needs of the organisation.”

Finding the best ways to communicate with peoplelinked to the TSA is another matter stimulating Tanya’sgrey matter. She plans to explore all options, includingbrushing up her own social media skills, to keep linesof communication strong and clear.

Tanya said:“Volunteering has huge potential for the TSAbut I need to make sure that all volunteers arecomfortable and supported in their roles.”It takes all sorts

Meet TanyaOur New Volunteer Manager

P8

P9

There are benefits to working with a range of people tohelp an organisation such as the TSA. People with an in-depth understanding can contribute expertise andpassion and those who have no previous experience ofTSC might bring a new perspective and an ability togive time with less risk of becoming emotionallydrained. For all types of volunteers there is tremendouspotential to gain a sense of achievement and feel greatlyrewarded.

Tanya divides the potential types of volunteers into threedistinct groups which she defines as follows:• Talent Pool: these would be people with a specific skillsuch as social media or putting together grant bids whowould be directed by a specific member of staff. • Formal volunteers that are recruited to do a specificrole, and can commit to a role on a regular basis.• Supporter volunteers: these are people who supportfundraising and awareness raising activities on a moreinformal basis, such as manning cheering points at amarathon.Tanya’s plan of attack will be communicated tomembers as soon as it is ready to roll out.

Lastly first impressions So what are Tanya’s first impressions of the TSA? Well assoon as she got in touch regarding the post, she wasimpressed by how approachable and friendly theorganisation is. Tanya is also enjoying the flat structureof the TSA which means that she can have personal

contact with everyone in the team.

Coming from a larger organisation where there werespecialists in most areas, Tanya is rising to thechallenge of learning some new skills but reallylooking forward to getting in touch with people so shecan fully understand what is needed.

Tanya said:“The TSA is a very approachable, friendlyorganisation with really strong family values. It is vital thatas it grows we don’t lose that. “

We all owe Jeans for Genes a huge debt ofthanks for funding Tanya’s post, to try and helpus support more families affected by TSC. Jeansfor Genes raises money for Genetic DisordersUK, the charity that aims to transform the livesof thousands of children affected by geneticdisorders. Jeans for Genes Day is an annualfundraising event which took place this year onFriday 20th September. Millions of officeworkers and school children wore their jeansfor the day and made a £1/£2 donation, with 23charities benefitting from the funds raised.Find out more about this campaign here:http://www.jeansforgenesday.org/

P10

Summer ‘FUN’draising

Adrian Underwood, PaulRobertson and Jon Bruce allran the Ythan Challenge,supported by friends andfamily. They raised morethan £800 for the TSA –great work guys.

We hosted our new Yorkshire 3 PeakChallenge, and raisedover £3000 for the TSA.We’d like to say a hugethanks to Shaun,Mandy, Lewis andCharlotte Bastin, andNicola and GlynnDaykin for taking part.It was a 13 hour trekand it rained for 12.5hours – sterling effort.

Tough Mudder eventsare not for the faint hearted.We’d like to thank MoragRoss for taking on thechallenge for the TSA andraising £255. It was muchtougher than expected, butshe’s already registered fornext year’s event to raisefunds for the TSA. ThanksMorag.

We owe a huge debt of thanks to Dale Mitchell,twin brother to Alex Mitchell who died in May this year,aged 32, after battling TSC. Alex Mitchell was clearlymuch loved. The TSA received over £1700 in donationsfollowing his funeral, and Dale, along with friends andfamily of Alex, have raised more than £5000 throughvarious fundraising activities. We’d like to thank all ofAlex’s friends and family for supporting us at such adifficult time and celebrating Alex’s memory in this way.

STOP PRESSNicola and GlynnDaykin didn’t stop there– they organised aCharity PamperEvening and raisedanother £1582 for theTSA.

How incredible!

Ian Murch and his team tookpart in the Round the Islandrace, circumnavigating the Isleof Wight. Ian’s son, William (12years old), has TSC and lovessailing. He was super pleasedwith his dad’s fundraisingeffort. They raised anenormous £1730.

Did you all seethe new amazingRide London 100this summer? AlexSweeting took partfor the TSA, raised£125 and said it wasone of the bestexperiences of hislife! Want to joinnext year’s team?Get in touch withEmma.

We’d like to say a hugethank you to the children whotook part in the Jane TomlinsonRun For All, York. They raised£700 and we think they looksmashing in purple.

As the end of 2013 comes into sight, it’s always nice to reflect back on our fundraisers’achievements over the last six months. And gosh, there are some serious achievements!We’ve had marathon runners, triathletes, international cycle challenges, sailing events and

much, much more. Here’s our fundraising gallery where we get the chance to say THANK YOU forsupporting the TSA.

Alisar Taylor is a woman on a mission.She’s organised a TSA supermarket bagpack that raised over £900, took part in afun run and the Great North Run; all in aid ofthe TSA.

P11

Summer ‘FUN’draising

Phil Deakin, Graham Birch andSteve Moss all get a huge thumbsup from us for completing theirevent which they named BreretonWheelers 123. Completing 1 ride,2 laps of the Peak District and 300miles they raised an enormous£2486.

Thanks to everyone who wentto support the Morden CricketClub Family Fun Day, and specialthanks to Laura and Stewart Smallfor organising the event insupport their son Alfie. Theyraised £2126 and a great day washad by all. Good work!

Huge thanks to Paul Dalloway,acclaimed air brush artist,and pals at Graf-X for raisingover £340 for the TSA

Stewart Miller took part in the DurtyTriathlon for his son Patrick, who has TSC.Biking, running and open waterswimming for the TSA, he raised an eye-watering £2389. Pictured here is Patrick athis Music Therapy session and Stewartwith Patrick’s older brother Ruairi afterthe event. “It’s nice to do something positive for TSCfor a change!” Stewart Miller

Amy Butler and pals flew theTSA flag and took part in the LeedsFun Run and raised £632. Thankseveryone.

Derek Noble and Paul Wheatley relivedtheir cycling adventure of four yearsago, joined by David Shaw and PaulMunro, and Paul Wheatley’s wife Jacquiin the support car; with a cycle from StMalo to Geneva for the TSA. And, theyhave raised nearly £3000. We’re chuffed.You’ll be able to find a blog on theiradventure on our website soon.

Ken Welbydid a supersmashing jobwith the TLA10k Race Dayand raised£2100. Ken,big thanksfrom all of us.

Eva and Lukas Szczesniak, and theirbeautiful daughter Nicola are anexceptional family. Lucas and his pals,Danny, Tony, Pete and Martin from AJMdecorating took part in a 170 mile cycleride from Morecambe to Bridlington inJune, raising over £3000. Lucas had hislegs epilated and raised over £800. Andnow Eva, her sister Kamila Ankutowiczand friend Lucie Hamilton raised over£2000 by shaving off their hair. Eva feltthat the loss of hair was nothingcompared to the bravery Nicola shows inthe face of TSC. We all owe them a hugedebt of thanks!

And, as if Tom’s friends hadn’tdone enough for us, we’ve justlearned that Jack Robinson tookpart in Tough Mudder South Westand raised another £750 for theTSA. What a lad!

Well, Tom Stafford and his colleagues at SoftCat have done itagain. This time they took part inDown Tow Up Flow Half Marathonand raised £3240. We’d like to thank John Gatrell, Steve Bull,Hayley Searis, Nina Wilden, FayeMorgan, David Frith, JamesPritchard, Mark Stevens, RichardLamacraft, Joe Pemberton and Kerry Hopkins for running andMartin and Mandy Hellawell forsupporting them.

A little birdy tells us thatAlison Walsh and friendsraised over £400 from theMilton Keynes Big Fun Run inJuly. Super fly, thanks Alison.

As the father of a young man with TSC, supportingresearch into TSC is very close to my heart. This is whyin September 2013 I agreed to take over the chair ofRESCOM, the TSA’s research committee from CatherineFalconer who has served three years at our helm. Iwant to take the opportunity to thank Catherine for herable leadership over the past three years and forproposing me as her successor.

Timing is everything, and I certainly take over the helmof RESCOM at an exciting point in time. We’ve seenphenomenal progress in our understanding of TSC andin its treatment in recent years and the TSA can bejustly proud of the contribution that it has made to thefield.

In our research strategy, penned in 2012, we committedto investing £250,000 per annum into TSC research by2018. I am delighted that, with the 2013 grant round, wehave already met that target. This year we havecommitted to supporting a new Junior Fellowship andthree new project grants.TSA Junior Fellowships are open to outstandingscientists who are in the early stages of their career and

who have the potential to become leaders in the field ofTSC research. I am delighted that this year’s awardgoes to Dr Kayleigh Dodd from Cardiff. By employinggenetics, cell biology and biochemistry techniques,Kayleigh will explore a new functional role of TSC2 thatwe hope will open up new avenues for futuretreatments.

Also successful in this year’s grant round are Kaleigh’sCardiff colleagues Andy Tee and Ming Shen. Dr Shenwill be testing agents in the laboratory with the aim ofsuppressing cell proliferation and promoting naturalcell death in TSC tumours. Dr Tee will be researching aprocess known as “autophagy”. The word autophagy isderived from Greek words “auto” meaning self and“phagy” meaning eating. Autophagy is a normalprocess in the body that deals with destruction of cells.This one-year pilot project will test whether inductionof autophagy holds promise as a future treatment forTSC.

In addition, this year we have committed to supportingthe TSC1 and TSC2 variation databases that werestarted in 2005 for a further two years. Thesedatabases, established by Professor Sue Povey, are anincredibly valuable resource. They can be used towork out which parts of both genes are most importantand, if we are able to work this out, we are closer todeveloping new and improved treatments for TSC.

It is incredible to think that, with so little governmentinvestment into rare disease research, these importantand ground-breaking projects have only been madepossible by the generosity of our donors andsupporters and by the phenomenal dedication andhard work of all of our community fundraisers. Ourgoal is to attract the best researchers into the field ofTSC research and keep them achieving at that level todeliver positive outcomes for people affected by TSC.

All this is only possible if we are able to fund andchampion TSC research and TSC researchers. As wenear the end of an eventful research year, I would liketo thank you for your invaluable contributions and wishyou all the best for the holiday season and for theNew Year.

Perry JamesChair of the TSA’s RESCOM

Breaking NewGroundPerry James, the new Chairof the Research Committeeoutlines the TSA’s newresearch investments.

P12

P13

Our research and reports from caregivers tell usvery clearly that behaviours such as self-injury,aggression and property destruction arecommon problems for people with TuberousSclerosis Complex.

While TSC is highly variable and only somepeople will develop these behaviours, for thosewho do show self-injury, aggression or propertydestruction this can have an impact both on thepeople who show the behaviour and those whocare for them. There are many reasons why aperson may show this type of behaviour.

For example, it can act as a form ofcommunication for those who have limitedcommunication – to say ‘I want that’ or ‘Leave mealone!’ or it may be a response to pain ordiscomfort. We want to improve understanding ofwhy people with TSC might show thesebehaviours and so how they might be moreeffectively changed. Improved understanding ofthe causes of self-injury, aggression and propertydestruction will help us to find ways to interveneto reduce the behaviour.

If your child shows self-injury, aggression orproperty destruction then please take a look atthe following information and get in touch if thestudy sounds relevant to you!

Who can take part?Children with TSC with aged over 2 and under 15years old, who show frequent self-injury,

aggression or property destruction and who havelimited verbal communication.

What would be involved?We will talk to you about the behaviours theperson you care for shows and ask you to fill outsome questionnaires. After this we will carry outa research visit. Either you can come and visit usat the University of Birmingham (we will coveryour costs), we can visit you at home or we canmeet your child at school.

What are the benefits?The results would help to improve the wellbeingboth of children showing self-injury/aggressionand also those who care for then. You will receivea personalised feedback report of theinformation that we gather about your child.

I am interested – who do I contact?If you think you might be interested in takingpart or have any questions or queries, pleasecontact:

Dr Lucy Wildeeither by phone on 0121 414 3861or by email at l.v.wilde@bham.ac.uk

For those attending our TSA Conference inNovember, there will be the opportunity to speakto Dr Lucy Wilde personally.

Study into challenging behaviour in children with TSCDoes your child with Tuberous Sclerosis Complex show self-injury,aggression or property destruction?

New NICE Guidance on theManagement of AutismNICE have issued new guidance on the assessmentand management of autism in children and youngpeople. This new guidance recommends a range oftreatments and interventions to help ensuremanagement addresses the person’s individualneeds.

Interventions covered include anticipating,preventing and managing challenging behaviourand overcoming sleep problems.

NICE has recommended that health and social careprofessionals receive training that includes how tocommunicate effectively with children and adultswith autism. It should also cover how to recogniseother conditions that a person with autism maydevelop such as ADHD, anxiety and depression.Some features of behavioural problems associatedwith autism may not show until a change of situation,such as starting or changing school.

As a result, NICE has recommended that trainingcovers the importance of key transition points. Inaddition, it should cover the child or young person'sexperience of autism and its impact on their family,including their siblings and their parents or carers.

The latest classification of autism specificallyincludes Tuberous Sclerosis as a cause of autisticspectrum disorder. This is important for people withTSC as it allows a diagnosis that is recognised byeducational, social and healthcare services andshould trigger the help and support that is needed.NICE has produced information for the parents andcarers of children and young adults with autism.

A copy is available to download from the website

New Guidelines Released forDiagnosis, Surveillance andManagement of TSCThe Tuberous Sclerosis Alliance (TS Alliance) hasformally announced newly updated clinicalconsensus guidelines for the diagnosis, surveillanceand management of tuberous sclerosis complex(TSC).

The 2012 International Tuberous Sclerosis ComplexConsensus Group comprised 79 specialists from 14countries. The recommendations are relevant to theentire lifespan of the patient, from infancy toadulthood, including both individuals where thediagnosis is newly made as well as individualswhere the diagnosis already is established.

Dr Chris Kingswood, who co-chaired the nephrologygroup said; “These new, evidence-based guidelineswill deliver significant benefit for people with TSC.This is because we now have the tools we need toprovide the most up to date care and treatments. Thiswill improve outcomes for individuals, regardless ofthe severity of their TSC or their age.” On receiving news of the publication of theguidelines, Jayne Spink, CEO of the TuberousSclerosis Association said,“It is vitally important that these guidelines areimplemented. The TSA is fully committed tosupporting their rapid uptake by the NHS.”

To communicate the recommendations tohealthcare professionals, the October issue ofPediatric Neurology includes two peer-reviewedpapers detailing the new guidelines.

The full text of these papers are available on ourwebsite.

Coming Up

What’s New?We wanted to remind readers of SCAN to keep a watchful eye on ourwebsite as new information that might be of interest and use to you is regularly uploaded online. We’ve reproduced below a couple of the morerecent posts in case you haven’t spotted them online yet..

Under www.tuberous-sclerosis.org/news.html you will find the following:

Next time in SCAN we will bringyou a report of the 2013 AnnualConference (#tsacon) and an in-depth look at one of our newresearch investments.There will be more fundraisingnews and the launch of the 2014Tea & Scones 4 TSC Campaign.

P14

Spring 2014

P15

Our TSC Advisers are part time, covering alarge geographical area. Depending on thesituation we’re asked to help with, our face to

face support may not always be possible because ofour distance away from you.

If you call, please do leave a message as your advisercould be attending a meeting or supporting someoneaffected by TSC. As we’re not based in a centraloffice, it will only be your adviser who hears yourmessage.

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

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

Jayne Spink is the Chief Executive ofthe Tuberous Sclerosis Association. Jaynealso has responsibility for mattersrelating to research.

PO Box 4538, Windsor SL4 9DPjayne.spink@tuberous-sclerosis.org0208 690 2288

Your contacts at the TSA

Support Services

Fiona Clark covers the North East andNorth West England and Wales. She works21 hours per week

fiona.clark@tuberous-sclerosis.org01625 427 872

Maureen Tossi covers Greater London,South East and South West England. Sheworks 28 hours per week.

maureen.tossi@tuberous-sclerosis.org01865 865 089

Lynn Shields covers Scotland. Sheworks 28 hours per week

PO Box 8728, Airdrie, Scotland ML6 8WPlynn.shields@tuberous-sclerosis.org01236 608 257 - 07510 595 968

Janet Brewer Head of fundraisingis your contact for information on generalfundraising and giving to the TSA, andawareness raising. Janet works 28 hoursper week.

PO Box 4538, Windsor SL4 9DPfundraising@tuberous-sclerosis.org01753 842 362

Fundraising

Emma Damian-GrintCommunityFundraising & Digital CommunicationsManager is your contact for informationon community fundraising, sponsoredchallenges and social media.Emma works 30 hours per week.

PO Box 4923, Sheffield S2 9EUfundraising@tuberous-sclerosis.org0114 270 1723

Tanya DarntonVolunteer Manager.

PO Box 623, Southampton, SO50 OJXtanya.darnton@tuberous-sclerosis.org0238 0730 823

IMPORTANTPlease note our address if you are sending in a donation cheque, or a cheque from your fundraising event or activity:Emma Damien-Grint, Tuberous Sclerosis Association, PO Box 4923, Sheffield S2 9EU

Wishing Everyone a Merry Christmasand Best Wishes for a Happy New Year

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: Abertawe House, Ystrad House, Fforestfach, Swansea SA5 4JB

www.tuberous sclerosis.org