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Welcome to Hunter's Hope!

Pumpkin Face Hunter James Kelly (2/14/97 - 8/5/05)


With great honor we present to you children affected by Leukodystrophy.

Wall of Fame


"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  

Kelly Family Story

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Bidding for our
550 Auction on
WGR Sports Radio
starts June 3rd!

Learn More  

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everysister...
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Scarlett

Scarlett Fedorak


NYMAC Baby

Photo courtesy of www.photohome.com

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HJKRI_CoE Building with blue border

Life Saving Treatment

Cord Blood Transplantation is a viable treatment for children with Krabbe disease diagnosed prior to becoming symptomatic.

See how the lives of Scarlet, Marcus & Zoey have been changed because of early detection and treatment.

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Krabbe Newborn Screening (NBS)

Important Information for Parents Whose Baby Screened Positive for Krabbe Disease

 

Supplemental NBS

Are you or is someone you know pregnant?

Find out how many diseases your state screens for at birth. You may want to consider getting supplemental NBS for your new baby.

Learn more about Supplemental NBS Screening for Krabbe & 5 smiliar disorders.

Every State

Although every state has a NBS program, all states do not screen for the same diseases, and only New York and Missouri currently screen their newborns for Krabbe. 

Let's make sure that all children are screened for all possible diseases, in every state.

You can help! 

Take Action for NBS

Hunter James Kelly
Research Institute

The mission of the HJKRI is to study myelin and its diseases in order to discover ways to repair myelin and find treatments and a cure for Krabbe and other Leukodystrophies. 


Meet the Basic Science team and learn more about research at the Institute...