Affected Family Registration

Register Here

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…

If you’ve already registered as an affected family but just want to update your contact information, please email us.

Hunter KellyLearn 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.