Personal Budgets and Direct Payments Information Evening
In May, we hosted a free online information evening focused on personal budgets and direct payments, helping families better understand the support available to them.
Led by Benefits Advisor Anjela Jones, the session explored what personal budgets and direct payments are, who may be eligible, and how they can be used to help meet individual care and support needs. Attendees also heard valuable real-life experiences from a family within the AT community, providing practical insight into how these arrangements work in everyday life.
▶ Click below to watch the recording.
AT Awareness Video – Rare Disease Day 2025.
This short animated film explains what ataxia telangiectasia is and how it affects people.
We created two short films about ataxia telangiectasia. Families and experts talk on camera about a diagnosis of AT, what happens next and what the future holds.
Meet some of our families
Jilly is a fabulous fundraiser for the AT Society. She runs Jilly’s Cupcake House, and donates everything she earns from her cake orders. Not only do these donations help kids and adults with AT, she has also found it’s a fantastic way to raise awareness about AT to a massive (cake loving) audience. It’s also a chance for her to show everyone that despite having AT, she can design, bake and create beautiful cakes. Having AT does not stop Jilly from doing what she loves. Here, Jilly talks you through decorating a Jubilee traybake using the Union Jack.
As part of her Duke of Edinburgh Award Scheme Merry, who has AT, planned her own Triathlon and made it happen with sheer determination, patience, will power and the support of her family and friends. Her adventure was captured on film thanks to Trapeze Film.
