Families Taking Action
of the most powerful voices for Expanded and Universal 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 and Universal 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 Every State and how to take action in your community, please visit our TAKE ACTION page or contact us at firstname.lastname@example.org.
||"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...
(Left to Right): Sean Stutzman, Jamie Stutzman, Mike Stutzman; center - Reesa Stutzman, Krabbe Leukodystrophy
For the second year in a row, California families are advocating for Expanded Newborn Screening for Krabbe. Although the bill has been amended from its original form, we believe the passage of SB 224 could be a huge step toward statewide Krabbe newborn screening in CA.
See how two California mothers make a powerful impact for Krabbe NBS in their state
If you live in CA, contact your legislator in support of SB 224
(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
Read Illinois Legislation which added Krabbe and other Lysosomal Storage Disorders to Illinois Newborn Screening Panel...
Read the Liam Hammonds Act...
(Left to Right): Scott Hammonds, Liam Hammonds (Krabbe Leukodystrophy) & Terry Hammonds.
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 a decision has yet to be reached, progress is being made toward Krabbe NBS throughout the state.
(Left to Right): Marcus Mattina(Cord Blood Transplant, Krabbe Leukoydstrophy), Rita Mattina & Rosemary Gunsett
"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
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
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...
"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)
"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
Hunter’s life?" ~ Excerpt from a letter written by Jacque Waggoner, Hunter's Grandma
Learn more about the Kelly family's commitment to Expanded and Universal 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.
The Wilsons are working with their state senator for Krabbe NBS legislation. Although the bill was amended from its original form, we believe this to be a step toward statewide screening for Krabbe and similar disorders in Oregon.
Learn more about how the Wilson’s are fighting to change Oregon's current NBS laws...
Read SB 284
*Pictured: (Left to Right):Marshall Wilson (Krabbe Leukoydstrophy), David Wilson, Tammy Wilson, Michael Wilson (Cord Blood Transplant, Krabbe Leukodystrophy), & Melaney Wilson
Families in PA are fighting for HB 1654, also called Hannah's Law. If passed, Hannah's Law will add Krabbe and five similar disorder's to the state's newborn screening panel.
Learn more about how Hunter's Hope and PA families are advocating for change
Learn more about HB 1654
*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...
If you live in TN, contact your legislator in support of SB 589/HB 74
(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...