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 Leukodystrophy, we are here to help and support you.

The first step as an affected family is for you to Register Here.

If you need immediate assistance, please email, or call the Hunter’s Hope office at 716-667-1200. Someone is in the office on weekdays from 8:30 a.m. to 4:30 p.m. Eastern Standard Time.

Thank you for joining us in this fight and welcome to our family.

If you’ve already registered as an affected family but have a question or need help, please email or call as noted above.

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.