This year’s Rare Disease Day focus is research. Today, February 28, patient organisations are busy highlighting so much of the fantastic research currently being undertaken to better understand a whole range of rare diseases. We are using this spotlight to share the work of some of those undertaking research into TSC. The TSA began funding research into TSC in 1980. Since then
BEE-PP project and the BEE study (Brain development in Early Epilepsy Parent Priorities) and (Brain Development in Early Epilepsy) Information about the BEE-PP project and the BEE study and how you can get involved The BEE-PP project and the wider BEE study is led by Dr Charlotte
EDiTS study (Early Development in Tuberous Sclerosis) Information about the TSA-funded research EDiTS and how you can get involved Early Development in Tuberous Sclerosis (EDiTS), a study being part-funded by the TSA, is taking place as a collaboration between King’s College London, the Centre for Brain and
Women's health Information on women's health and living with Tuberous Sclerosis Complex Most girls and women who live with TSC will experience the same journey in women’s health, such as periods and menopause, as those who do not live with the condition. However, there are some things
Women in STEM: Natasha Lindsay (PhD) Meet Natasha, a PhD student and TSC researcher working on the EDiTS study. Natasha Lindsay is PhD student researching TSC and early onset epilepsy at King’s College London (KCL) alongside her role co-ordinating the Early Development in Tuberous Sclerosis (EDiTS) study – part-funded by
2022 TANDem seed grant funding round Empowering individuals and families who live with TSC from around the world Now open: Seed award applications in areas with direct relevance to TSC-Associated Neuropsychiatric Disorders (TAND) Nine out of every 10 people living with Tuberous Sclerosis Complex (TSC) develop TSC-associated
The TSA is thrilled that TSA Trustee and Head of Research Strategy Dr Chris Kingswood has won the 2017 Manuel R. Gomez Award. Dr Kingswood received this award on Thursday 22 June 2017 at the US TS Alliance and LAM Foundation ‘2017 International Research Conference on TSC and LAM: Innovating Through Partnerships’ in Washington DC.
When TSC is suspected or diagnosed during pregnancy Information if you've been told that your unborn child might have TSC When Tuberous Sclerosis Complex is suspected or diagnosed in an unborn baby, it can be a time of worry, frustration and great distress for everyone involved. It may
 NHS England has announced today [Saturday 7 July 2018] that it will not fund everolimus for the treatment of refractory epilepsy for people with Tuberous Sclerosis Complex (TSC) in England. The announcement comes less than a month after the Scottish Medicines Consortium (SMC) recommended everolimus for patients with TSC-related epilepsy living north of the
Team TSA are pleased to provide you with the full agenda for this years’ Big Day, which takes place on Saturday 10 November at Sheffield Hallam University:   08:45 – 10:00 Registration 09:15 – 09:45 TSA’s Annual General Meeting (AGM) 09:45 – 10:00 Short break 10:00 – 10:10 Welcome to the Big Day 10:10 – 10:30 Introducing the
It was with great sadness that we brought you news earlier this month that Professor Sue Povey, a pioneer in the field of genetics and TSC, had passed away. Here Professor Julian Sampson (Director, Division of Cancer and Genetics, Cardiff University and Professor Sue Povey’s colleague) pays tribute to a woman whose fantastic support and
The 2019 Prudential RideLondon-Surrey 100 takes place 3-4 August and we can now introduce you to the fantastic #TeamTSA team who are taking on the challenge! The eight cyclists will put on their cycling gear to brave the 100-mile journey to raise funds for the TSA so that we can continue to support those affected
The TSA is delighted to host 'An Evening with David Suchet CBE' on Thursday 19 September at the prestigious National Liberal Club, London. During the black-tie fundraiser dinner, award-winning actor David Suchet CBE will reflect on an incredible stage and screen career, including his early roles portraying an impressive catalogue of Shakespeare characters, twenty-five years
The TSA has extended the period for the TSC community from across the UK to share their concerns and hopes ahead of the upcoming launch of the UK-wide TSA support line. The TSC community can share feedback with the TSA through a support line survey, with virtual focus groups and a pilot of the
After seven years of hard work and dedication, the TSA is to say a heartfelt thank you and goodbye to Tanya Darnton (Fundraising Manager) in early January, when she moves on to a role away from our charity. Tanya has done an incredible job during her time at the TSA across different positions. Many
Born to be Different is an ongoing programme on Channel 4 that follows the lives of six families affected by different conditions. Paula Davis and her family, including son William who lives with TSC, are one of the families participating in the programme. We caught up with Paula to find out more about her
Our understanding of TSC continues to improve only because of the efforts of everyone in the TSC community, including TSC researchers. Dr Charlotte Tye (Kings College London) is a TSC researcher, and took some time to tell us about life as a researcher, her work for the TSC community and how life changed for
Everyone at the TSA was very saddened to hear of the passing of Olive Lindsell on Saturday 1 August. Olive - a much loved mother to Peter, Joanna and Susie, and wife to Tony - was a pioneer in bringing the TSC community together and was instrumental in the early years of the Tuberous Sclerosis
The TSA has received a high number of enquiries through the TSA Support Line about covid-19 vaccines. Here, we explore some of the common questions that you have asked. The TSA Support Line has received questions including: How quickly can people living with TSC and their carers be vaccinated against covid-19? Is it safe
Positive results from the EPISTOP trial - which is researching the potential benefits of early treatment with vigabatrin to prevent seizures in people living with TSC - have been published. EPISTOP is the first clinical trial to demonstrate a beneficial preventative treatment for any form of epilepsy. The EPISTOP trial found that early treatment
Early bird registration for the International TSC Research Conference 2021 is now open. The conference - aimed at clinicians, researchers and other professionals in TSC - is being proudly organised by the Tuberous Sclerosis Association. Delegates who wish to register can do so here, with early bird registration available until 16 May 2021. The
