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Affected Family Registration

Register as an Affected Family ButtonNo matter what brought you here to this 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! The ultimate goal of Hunter's Hope Foundation is to find a cure for Krabbe disease and other leukodystrophies. We hope you will join the Hunter's Hope family in achieving this goal. With your help, by registering yourself or your affected family member we will be able to prove higher prevalences of these diseases to assist us in our fight for Expanded & Universal Newborn Screening.

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

Once you become a registered family, we encourage you to tell your Family’s story. With your permission, we would welcome the opportunity to feature your family and your personal story on the families section of our website. Tell your story and impact those who have shared in your family’s battle with Krabbe or other Leukodystrophy disease.

 

Meet Krabbe & Leukodystrophy Families...

Elmer
"By being a part of the Hunter's Hope family, I have been supported through the Family Program while I went through the transplant process with my son. I could never thank Hunter's Hope enough for all the help and emotional support we received!
"
~ Ana, mom to Elmer (Krabbe Disease diagnosed through Newborn Screening, transplant)



Elmer was born March 4, 2007. He was the first baby to be diagnosed with Krabbe disease after Newborn Screening (NBS) standards were improved and Krabbe was added to the NBS panel in the state of New York. Elmer received a Cord Blood Transplant at Duke University Hospital in Durham, NC on April 6, 2007. Currently, Elmer is thriving and continuing to gain new skills.


     
 
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"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to
give you hope and a future." 
Jeremiah 29:11 

 


About Us

Mission
Hunter
Kelly Family Story
Hunter's Hope Team

Research
HJKRI Clinical Center
HJKRI Basic Science Center
Extramaural Research
Medical & Science Symposium
Research Publications
Historical Research

 


Krabbe and Leukodystrophies

About Krabbe
About Leukodystrophies

Newborn Screening
What is NBS?
Krabbe NBS
State and Federal Info
Take Action
Families Taking Action
Supplemental NBS
Why NBS?

 


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Wall of Fame
Affected Family Registration
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Kaden's Kisses

 


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  6368 West Quaker Street, PO Box 643, Orchard Park, NY 14127 |  (716) 667-1200