Tuberous Sclerosis Association

Support, research and advocacy for the Tuberous Sclerosis Complex (TSC) community. Social media community guidelines:

[Tuberous Sclerosis Association @UKTSA]

It's a YES 💚 #Scotland decision-makers agree to fund Hyftor for facial angiofibromas in #TSC. This means that Hyftor will be available on #NHS Scotland for people with TSC aged over six years! More here: https://t.co/G8WhYvAHn0

#RareDisease #treatment

[Joseph Bateman @BatemanLab]

Great to see this published and thanks to all 42 co-authors! Including @SilaUltanir @jansen_ac @palneurolab @UKTSA @CellsigL

[Tuberous Sclerosis Association @UKTSA]

#InternationalDayofWomenandGirlsinScience #IDWGS #research #RareDisease @CharlotteRTye @BissellStacey @pasavaperaqui @jansen_ac @ShafaliJeste

[Tuberous Sclerosis Association @UKTSA]

Today's International Day of Women and Girls in Science. Not only that, but it's also the 10th anniversary of this important occasion to celebrate the women and girls making a huge difference to our understanding of TSC👏

[Tuberous Sclerosis Association @UKTSA]

#tsc #tuberoussclerosiscomplex #raredisease #learningdisabilities #Advocacy #advocate #campaigner #OBE #trustee #epilepsy #EpilepsyAwareness #Disability (5/5)

[Tuberous Sclerosis Association @UKTSA]

It is with a very heavy heart that we announce that Jean Willson OBE, one of the original founders and former trustees of the TSA, has passed away (1/5)

[Tuberous Sclerosis Association @UKTSA]

Jean will be deeply missed and our thoughts are with her family (4/5)

[Tuberous Sclerosis Association @UKTSA]

In recognition of her service to those with learning disabilities and their families, Jean received an OBE, Queen’s Birthday honour in 2011 and a Woman of the Year award in 2010 (3/5)

[Tuberous Sclerosis Association @UKTSA]

Jean was an inspiring lady who campaigned fiercely to give people with learning disabilities a voice in the community. Inspired by her daughter Victoria, who lived with TSC, Jean made an incredible difference with her campaign work (2/5)

[Tuberous Sclerosis Association @UKTSA]

We had a brilliant time attending the mTOR Pathway Diseases node patient organisation workshop last week. Great to hear exciting updates from the #Research team and a great opportunity to connect with other patient orgs @BatemanLab @CharlotteRTye

[Joseph Bateman @BatemanLab]

The excellent @CharlotteRTye led our mTOR Pathway Diseases node patient organisation workshop last week. Thanks to everyone that attended
@UKTSA @GoPI3Ks @ptenuki @LAMAction @myrovlytis @ChildGrowthUK
@EpilepsyInst @OrigamiCells.
Supported by @The_MRC @NIHRresearch @RDRUKHub

[Wales Gene Park @WalesGenePark]

Delighted to be holding a Living With Genetic Conditions session with @CardiffMetCSHS students. Huge thanks to our amazing expert Consultant Geneticist Dr Annie Procter & #RareDisease Advocate @PMTJames sharing her family's experiences of tuberous sclerosis @GeneticAll_UK @UKTSA

[Tuberous Sclerosis Association @UKTSA]

Today's #FridayFundraisers are the brilliant Tom Richardson and Catriona McFeely! Both took on Stoptober to raise funds for TSA. Tom raised an amazing £599 and Catriona a fantastic £615! Both have loved ones with TSC, motivating them to fundraise. Thank you Tom and Catriona! 👏👏

[Tuberous Sclerosis Association @UKTSA]

📢 LAST CALL FOR CHRISTMAS CARDS! 📢 Order your TSA cards and other goodies by 10 Dec to get them before the day itself. We've got a lovely selection this year, from traditional to modern, plus other things like magic snow and reindeer food! ☃️ https://t.co/BWNbDfNlqB

[Tuberous Sclerosis Association @UKTSA]

Your response to the Big Give Christmas Challenge 2024 has been amazing! But, to hit our target we need to keep it up! Until 10 Dec, all donations to us through The Big Give are worth DOUBLE! Our target is £9,000 to help run TSA support services next year:
https://t.co/gr17uCsWAc

[Tuberous Sclerosis Association @UKTSA]

It's here! The Big Give Christmas Challenge 2024 is LIVE! Every donation you give to us through the Big Give is DOUBLED until 10 December, at no extra cost to you!

Donate here: https://t.co/P8rr9PGgXl

Remember: One donation, DOUBLE the impact!

[Tuberous Sclerosis Association @UKTSA]

The Big Give Christmas Challenge is TOMORROW! Donations through the Big Give Christmas Challenge are DOUBLED! We’re raising £9,000 for support and information services for everyone with TSC. At 12pm tomorrow donate and every £1 you give will be worth £2! https://t.co/DXXSlU92F1

[Tuberous Sclerosis Association @UKTSA]

Today's #FridayFundraiser is the Rotary Club in Grantham! Mary McKinlay, Rotary Club President, chose the TSA as their charity of the year. They held their golf presentation evening recently and presented a cheque for £1,000!💚

[Tuberous Sclerosis Association @UKTSA]

1 week before #BigGiveChristmasChallenge2024! Donate 3 - 10 Dec via The Big Give and the amount is doubled at no extra cost to you! We're raising £9,000 for our support services, like Big Day - our annual event to bring people affected by TSC together.

https://t.co/gr17uCsWAc

[Tuberous Sclerosis Association @UKTSA]

At our Annual General Meeting 2024 we were delighted to have Dr Chris Kingswood update us on the latest in the TSC research. The session covers what's been achieved over the last 12 months, plus what's to come in the immediate future for TSC research.

https://t.co/UISJBB3Xdo

[Tuberous Sclerosis Association @UKTSA]

Our #FridayFundraiser thanks continue with Lisa Moore-Ramdin! Lisa was set for the Great South Run but it was cancelled due to bad weather. So, Lisa and her friends braved the elements with a 18k Forest Trail run, raising a fantastic £1,208! Thank you Lisa and the entire group!