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Families Taking Action

Jim Speaking to LegislatureOne of the most powerful voices for Expanded Newborn Screening is yours!

By telling your story, and how you were affected by newborn screening, or the lack of newborn screening, in your state, you show state legislators why the need for Expanded and Universal Newborn Screening laws are so important for millions of babies.

These families have taken action in their states for Expanded Newborn Screening.

Join them - you can TAKE ACTION too.

Hunter's Hope will work with you and your family to guide you through the process of identifying your legislators and taking the first steps in connecting with them. We can also help provide easy to use, online tools so members of your community and residents in your state, can help you make a difference.

To learn more about how to take action in your community, please visit our TAKE ACTION page or contact us at

NBS_Stutzmans Outside of CapitolArizona "As a grandparent being confronted with this, I can't crawl away and hide.  Krabbe was new to us, we had never heard of it. Now we think it's unofficially our job to get the state to include Krabbe in its newborn screening." ~ Mike Stutzman, Reesa's Grandfather

Learn how the Stutzmans are raising awareness about the importance of Krabbe Newborn Screening...

*Pictured (Left to Right): Sean Stutzman, Jamie Stutzman, Mike Stutzman; center - Reesa Stutzman, Krabbe Leukodystrophy


NBS_CA_Assembly_Kathleen_Scott_and_Christina_LevasheffCalifornia Several California families have been working toward the addition of Krabbe NBS in their state.  Although the state has yet to pass a law mandating Krabbe NBS, we continue to make progress toward this ultimate goal...

See how two California mothers made a powerful impact for Krabbe NBS in their state

*Pictured (Left to Right): Kathleen Scott, California Senator Mimi Walters & Christina Levasheff
The Hammonds along with other Illinois families advocated for Newborn Screening for Krabbe and similar disorders and in 2007 legislation was passed.  Additional legislation, called the Liam Hammonds Act, was also passed to study the incidence of Krabbe in Illinois and promote much needed research to better understand the disease.

Read Illinois Legislation which added Krabbe and other Lysosomal Storage Disorders to Illinois Newborn Screening Panel...

Read the Liam Hammonds Act...

*Pictured (Left to Right): Scott Hammonds, Liam Hammonds (Krabbe Leukodystrophy) & Terry Hammonds.
NBS_Marcus_and_Rita_Mattina_and_Rosemary_Gunsett Michigan Rosemary Gunsett began working toward Krabbe Newborn Screening in Michigan in 2012 in honor of her granddaughter, Kaitlin, who passed away from the disease in 2006.  After approaching her legislator, two special meetings of the state's NBS Advisory Committee were organized to consider adding Krabbe and similar disorders to the state's NBS panel.

The Mattina family, who have two sons affected by Krabbe, joined Rosemary in her efforts.  The Mattina's understand the importance of early detection, as their older son, Anthony passed away from the disease in 2004.  Because of his diagnosis, Anthony's younger brother Marcus was diagnosed and received treatment immediately after birth in 2008. Marcus is now a vibrant little boy and in elementary school.

Although MI still has not added Krabbe to the state's newborn screening panel, progress is being made toward Krabbe NBS throughout the state.

*Pictured (Left to Right): Marcus Mattina(Cord Blood Transplant, Krabbe Leukoydstrophy), Rita Mattina & Rosemary Gunsett
NBS_Cunningham_FamilyMissouri "The legislation is named for Brady Cunningham, a southeast Missouri boy who died in April from Krabbe Disease. Earlier this year, Jessy and Dustin Cunningham brought their son to the Capitol from their Campbell home to urge lawmakers to approve the bill." ~ Excerpt from article

Learn how Brady's family advocated  in his honor...

Learn more about Missouri beginning the screening process for Krabbe Disease...

*Pictured (Left to Right): Alyssa Pace (cousin), Becky Ruth (grandmother), Jessy & Dustin Cunningham, Teresa Cunningham, Missouri Governor Jay Nixon
NBS_Governor_ChristieNew Jersey Learn how Emma's family told their story to legislators by reading the full letter...

Learn more about the passage of Emma's Law in New Jersey...
NBS_New_Mexico_McAdamsNew Mexico "Hunter's Hope teamed up with a New Mexico Family affected by a Leukodystrophy and with House Representative Rhonda King to increase New Mexico’s panel of diseases that newborns are currently screened for by five. Kelly spoke with the New Mexico Senate and Governor Bill Richardson today and they passed House Bill 201, which will amend the Public Health Act, requiring the Department of Health to add five Lysosomal Storage Diseases to the newborn
screening panel." ~ Excerpt from article

Learn more about how Tyler's family took action in New Mexico...

*Pictured (Left to Right): Diego Arencon, David Heshley, Tyler McAdams (MLD), Jim Kelly, Michelle Grisham, Julie Allen (grandmother)
New York
"My hope and prayer is that what you learn on this site will ignite a passion in your heart, a passion so great that you will not rest until every child born in the United States is screened for the most diseases possible; ensuring every newborn in every state has a fair start at life. Did you know that a simple heel prick through a newborn screening test could have saved my grandson, Hunter’s life?" ~ Excerpt from a letter written by Jacque Waggoner, Hunter's Grandma

Learn more about the Kelly family's commitment to Expanded Newborn Screening...

*Pictured: Jim Kelly, Co-Founder of Hunter's Hope testifying about the importance of Newborn Screening
Marshall and Michael Wilson are two brothers affected by Krabbe Disease - Marshall was diagnosed after the disease was too far progressed for treatment.  Michael, his younger brother, was diagnosed early and received a lifesaving cord blood transplant, stopping the progression of this devastating disease.

In past years, the Wilsons worked with their state senator for Krabbe NBS legislation.  Although a law has yet to be passed, we know that they have been successful in advocating for this change in their state.

Learn more about how the Wilson’s are fighting to change Oregon's current NBS laws...

*Pictured: (Left to Right):Marshall Wilson (6/15/09 - 3/5/16) (Krabbe Leukoydstrophy), David Wilson, Tammy Wilson, Michael Wilson (Cord Blood Transplant, Krabbe Leukodystrophy), & Melaney Wilson
NBS_Hannah's Law_Testifying
In October, 2014, Pennsylvania passed HB 1654, also called Hannah's Law, to add Krabbe and five similar disorder's to the state's newborn screening panel.

 Learn more about HB 1654

Learn more about the signing of Hannah's Law

*Pictured: Vicki Pizzullo (Hannah's mom) sharing how Krabbe NBS in PA could have saved her daughter's life

“I believe that my life was saved so that I can speak out for babies with Krabbe, who are unable to speak for themselves. I believe that my purpose in life is to help others affected by Krabbe and diseases like it.”  ~ Scarlett Measles, testifying to her State Legislators in support of Newborn Screening for Krabbe Disease

Learn more about how Scarlett and Phil are making a difference in Tennesee...

*Pictured (Left to Right): Scarlett Measles (Bone Marrow Transplant, Krabbe Leukodystrophy), & Phil May
"The Texas Senate on Thursday unanimously adopted a bill by Sen. Carlos Uresti that will expand the state's genetic disease screening program for newborns. Senate Bill 1720 was dubbed Greyson's Law for Greyson Morris, who died just short ofhis first birthday of Krabbe Disease, a degenerative disorder of the central and peripheral nervous systems. Early detection of the disorder could have prevented Greyson's death." ~ Excerpt from article

Learn more about Greyson's Law...

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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 


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