Affected Family Registration


No matter what brought you to our family registration page or where you are at in your child’s or your own diagnosis of a Leukodystrophy, we are here to help and support you. Please let us know how we can help you — contact us.

Registration is easy and quick to complete. Thank you for joining us in this fight and welcome to our family…


Hunter Kelly - Leukodystrophy HelpLearn More About Hunter

Hunter Kelly (2/14/97 – 08/05/05) was diagnosed with Krabbe Leukodystrophy when he was only four months old.  Click here to learn more about Hunter and his story.

Click here for information about a clinical trial for newly diagnosed Krabbe patients.