Tuberous Sclerosis Association

If you're doing a fundraising challenge or event, remember to ask your work about charity matched funding! Lots of companies offer to match the fundraising amount that an employer has raised, meaning you double your amount at no extra cost! 🤩 Places large and small offer this, from household names to local teams. There's lots more on fundraising ideas on our website: https://lnkd.in/e_Zfu4tf

We love catching up with TSC researchers, who dedicate their professional lives to the next big breakthrough in diagnosis, treatment and management of TSC. We recently chatted with Rory about his work looking at the importance of sleep in TSC. 🔬 https://lnkd.in/efKZ6Amg

This week's #FridayFundraiser is Leah Hickson! Leah learned how to do diamond painting during lockdown. When her care agency, SAI Infinity Care, recently had a fun day she setup a stall. Leah raised a brilliant £126, and plans to try and sell more! Well done and thank you Leah! 🎨

Today's #FridayFundraiser is Liam Kettle and Liam Salvidge, Dad and Uncle to little Darcie who has TSC. The pair took on a skydive to raise awareness and funds to help the TSC community, raising a brilliant £2,000! Thank you both for your amazing efforts! 👏🌟💚

TSA changes lives in many ways, including finances. That's why we have the TSA Support Fund, a special way that we can offer assistance to those in the TSC community who need extra financial help. 👋 It can be used for many different things, like household items, hospital visits, or a day at the beach. Whatever you use it for, the fund offers confidential and understanding financial support. https://lnkd.in/eCuVGVzV

⭐REGISTRATIONS NOW OPEN!⭐ Start 2025 with the London Winter Walk, putting you on the right steps to a great year while making a massive difference to people with TSC. Be sure to select the TSA when you register! Whether you're starting a New Year Resolution or want a fun day out with the family, there's loads of options for you including an accessible family fun 5K! https://lnkd.in/euQvfVEA

It's National Inclusion Week 2024! A brill way to highlight the positive impact that having diverse teams can have on the workplace - like people with TSC. We've got loads of resources about TSC and work, including a handy 'TSC in the workplace' guide. Download it here: https://lnkd.in/e8g55a2f

We’re proud to reach amazing numbers in the TSC community. The more we know about you and your TSC, the bigger our impact. Your feedback and views also help us secure funding for future projects that aren't possible right now, as well as help to improve things we already do. 💚 Grab a cuppa ☕ and take 10 minutes to complete our new ongoing survey: https://lnkd.in/e6NfUsGM

For today's #FridayFundraiser we celebrate Jonathan and Jonjoe Traynor! Jonjoe has TSC and plays rugby for his local team, Swillinton ARLFC. Jonjoe and dad Jonathan held a charity day with the team recently and raised an amazing £250! Well done and thank you to everyone involved!

The TSA is working to improve access to HYFTOR® across the UK and we need your help! Last year, UK decision-makers confirmed that HYFTOR® (also known as ‘topical sirolimus’) met standards of safety, quality and benefit for treating TSC-related facial angiofibromas (bumps and marks on the face). However, some people are still finding it hard to get the medicine. We’re working hard to make sure that everybody who needs HYFTOR® can access it. To do this, we need you to tell us about your experiences of the medicine by filling out a short survey. We’ll use this survey data, which is anonymous, to try to get everyone better access to HYFTOR®. https://lnkd.in/eBbwT7em