Each year, our Community Weekend brings together patients, carers, families, doctors, researchers, scientists and patient advocates from around the world for meaningful conversations about leukodystrophy, and its profound impact on both those living with the condition and those who care for them.

As far as we know, we are the only charity offering an event of this kind completely free of charge to families affected by leukodystrophy.

We provide accommodation, meals, childcare and entertainment, ensuring that families can focus on what really matters — learning, sharing experiences, and building lasting connections.

Throughout the weekend, patients and carers hear directly from leading leukodystrophy professionals and gain valuable insights, while also meeting others who truly understand the challenges they face.

We work hard to cover as much of the cost as possible through the generous support of our corporate partners. However, we still need your help to raise the remaining funds and make this vital weekend possible.

Please donate today if you can.

Thank you for your support.