This September, I’ll be taking on the Swindon Half Marathon to raise money for the Alex TLC Community Weekend. Over the coming weeks, I’ll be sharing updates on my training and progress, and I’d be incredibly grateful for any support.

Each year, the Alex TLC Community Weekend brings together patients, carers, families, doctors, researchers, scientists and patient advocates from around the world for meaningful conversations about leukodystrophy and its impact on those living with these conditions and the people who care for them.

The charity provides accommodation, meals, childcare and entertainment, allowing families to focus on what really matters — learning, sharing experiences, accessing expert knowledge, and building lasting connections with others who truly understand their journey.

Throughout the weekend, patients and carers hear directly from leading leukodystrophy professionals, gain valuable insights into managing their conditions, and connect with families facing similar challenges.

Alex TLC works incredibly hard to cover as much of the cost as possible through the support of corporate partners, but they still need help raising the remaining funds.

Our family has personally benefited from the support they provide. Our son, Noah, was diagnosed with Aicardi-Goutières Syndrome (AGS) in May 2025 at just 6 months old. AGS is a life-limiting condition that can affect mobility, communication and feeding. Alex TLC has provided us with expert advice, support with symptom management, opportunities to connect with other families facing similar challenges, and the chance to attend this incredible community weekend.

Any donation, no matter how big or small, would be hugely appreciated and will help ensure families like ours can continue to access this vital support.

Thank you for your kindness and support ❤️