Bethan
@Bethan79878351Research & Evidence Officer @UKTSA. BSc Genetics 🔬
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US-based @tsalliance is running a series of webinars about educating your child at home, as we start our journey of spending more time indoors. The first of the series starts tonight at 22:00GMT, with a recording available later.
If you or a member of your family have TSC, you may have questions or feel anxious about how coronavirus may affect someone who is living with TSC. You can find up-to-date information about coronavirus and TSC on our website: tuberous-sclerosis.org/news-coronavir…
Our support line pilot started has begun! Our TSA advisers are here to offer support and information on whatever TSC-related topic you would like to discuss. Get in touch over the phone, email or post, with webchat planned for later in the year. 📞📧📫 tuberous-sclerosis.org/information-an…
Delighted that @JeansforGenes have awarded us a grant towards our Community Research Education Afternoon, as part of the International TSC Research Conference 2020 in November! 💙 THANK YOU to @JeansforGenes and everyone's hard work for Jeans for Genes 2019 - let's look to 2020!
On Monday 10 Feb we'll pilot our upcoming support line. Call/email/write to talk to our small team of friendly and professional advisers about any UK nation TSC topic. The pilot will help us gather feedback, ahead of the support line's launch. More info: bit.ly/2GXN1Lb
TSC can sometimes feel isolating. By sharing stories, like Philippa did, we can help bring the TSC community together and highlight the impact that TSC can have on day-to-day lives. Read TSC stories on our website or get in touch to tell us yours: tuberous-sclerosis.org/life-with-tsc/…
"Unless you’ve lived with a condition you really don’t know what it’s like, but patients take comfort in knowing that I really do know!" Lesley Booth explains how her experience as a patient has helped her in her role as PPI lead @BowelCancerRSRC bit.ly/2ONfpmM
Would YOU recognize #infantilespasms is you saw them? Because all three of the parents of the children in this video reported #delay to diagnosis. #ISAN2019
Infantile spasms (IS) cause catastrophic & permanent damage to a child’s developing brain. Check out this video to know what to look for. And share this post to spread the word about IS. #ISAW2019
We're delighted to be awarded this funding from @HSFCharity with @UKTSA to continue our work charting the development of babies and toddlers with TSC!
A huge thank you to @HSFCharity Chief Executive Paul Jackson, who visited the TSA’s offices today to hand over an incredibly generous grant towards the early development in tuberous sclerosis(EDiTS) research study!
Today there are reports that two cannabis-based medicines, Epidyolex for rare forms of epilepsy and Sativex for multiple sclerosis, have been approved for NHS use in England. We have information about Epidyolex for TSC related epilepsy here: bit.ly/34OGnAL
What a great day we had! Thank you to everyone who came to Big Day 2019. 😀 It was fantastic to see so many of our amazing TSC community
Thank you @David_Suchet from all of us @UKTSA for raising awareness of rare genetic disease Tuberous Sclerosis Complex (TSC). Good luck on the @thismorning sofa! 🛋 🧬 ⭐️
We'll be keeping a look out for @David_Suchet on ITV's This Morning tomorrow from 10:30, discussing his new book Behind the Lens: My Life. David has helped raise awareness of TSC in interviews about his new book so far, which has been vital in increasing understanding of TSC!
The TSA formerly announces notice of its 2019 Annual General Meeting (AGM) taking place on the morning of Saturday 2 November at the Nottingham Belfry Hotel, prior to Big Day 2019. The AGM is free to attend. More info including our Treasurer's Report here: bit.ly/326K9o5
CONCORD - a research study into how services are coordinated for rare conditions and how they should be in the future - is looking for patients, carers and healthcare professionals to share their priorities and views in a survey. You can take part here: bit.ly/CONCORDsurvey
Today is #WorldMentalHealthDay - 1 in 4 are affected by mental health issues every year. Many in the TSC community are affected by TSC and mental health problems. Today, remind yourself of the importance of good mental wellbeing. See @MindCharity for more: mind.org.uk/get-involved/w…
We recently moved offices. After using a temporary address, we now have our new long-term address: TSA, Unit 56, 1 Emma Street, London, E2 9FP - use this for anything you send to us! 3/12 staff work in our small HQ - previously a shipping container - and the remaining 9 from home
For the first time, the EU has approved a medicinal cannabis (cannabidiol Epidyolex) for children with two rare and severe epilepsy forms. However, the NHS does not currently recommend Epidyolex. We will closely monitor the situation, with final guidance due late this year.
Updated advice on getting your medicines if there's a no-deal EU Exit from the NHS @UKTSA @AMRC nhs.uk/conditions/med…
Signing 1500 copies of my new book ‘David Suchet - Behind the Lens ‘ in bookshops Oct. 3rd pre order now! All Royaties will go to The Tuberous Sclerosis association. My Grandsons incurable condition.
Amazing! they have done it! Scott Simpson, Dan Collett and Mikee Clea, have climbed Mount Kilimanjaro, and have raised nearly £5000 justgiving.com/fundraising/sc… A huge thank you from #teamTSA
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