The TSA is seeking a highly experienced, confident and capable Head of Fundraising to provide leadership and direction on all aspects of income generation. This is an exciting time to join a small but hugely impactful charity where you will make a real difference
The Specialised Healthcare Alliance (SHCA) has released an important report highlighting the obstacles people face in getting diagnosis of a rare condition, with recommendations included on how this can be improved. As a proud member of the SHCA, we wholeheartedly endorse this proactive call
The TSA Support Fund is our emergency grant for people in the TSC community, providing emergency support when the financial costs of being affected by TSC become too much to handle. Following a massive number of enquiries, we're now struggling to keep the fund
We recently asked the TSC community to share their experiences of TSC and mental health challenges. Rae, who is aged 21 and was diagnosed with TSC when they were one, took the time to tell us their story: "Hi, my name’s Rae, and I’m
TS2000 is a landmark study that's tracking how TSC develops throughout a person's life. It's hoped that TS2000 will help to identify factors that contribute to the way that intellectual, cognitive and psychological challenges happen in TSC. The study is now entering a new
Tantrums, harm, and abuse are just some of the actions that fall under the category of "behaviours that can be challenging." This is a common obstacle in the lives of people with TSC. What are ‘behaviours that can be challenging’? A behaviour is deemed
An exciting new clinical trial has opened in the UK, focused on TSC-related epilepsy. Named after the Greek goddess of calm seas, the Galene study is seeking people in the TSC community to take part. Basimglurant - the name of the potential medicine -
Topical sirolimus gel Hyftor has received marketing authorisation in the UK for TSC facial angiofibromas (growths and marks on the skin from TSC). This means UK decision-makers confirm that Hyftor has met their standards for safety, quality and benefit. Hyftor is a gel that
We caught up with TSC researcher Liezl Schlebusch about the importance of carer wellbeing and her upcoming TSA-funded study, Well-Beans for Caregivers. Liezl is a lecturer based at the Centre for Autism Research in Africa at University of Cape Town. There is a saying:
As part of our work to highlight Global TSC Awareness Day and Global Mental Health Awareness Week, both of which started on 15 May, we asked the TSC community to share their experiences of TSC and mental health challenges. Rebecca, who is aged 24
