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Families Taking Action

Jim Speaking to LegislatureOne 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 unbs@huntershope.org.

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   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

*Pictured (Left to Right): Kathleen Scott, California Senator Mimi Walters & Christina Levasheff
NBS_Hammonds_Family
Illinois
  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 Hmmonds, 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 4 year old.

Although a decision has yet to be reached, 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)
NBS_Jim_Testifying_Before_Legislature
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 and Universal Newborn Screening...

*Pictured: Jim Kelly, Co-Founder of Hunter's Hope testifying about the importance of Newborn Screening
NBS_Wilsons_Testifying
Oregon
  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
NBS_Hannah's Law_Testifying
Pennsylvania
 

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 

NBS_Tennessee_Phil_May_and_Scarlett_Measles
Tennessee
  “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

*Pictured (Left to Right): Scarlett Measles (Bone Marrow Transplant, Krabbe Leukodystrophy), & Phil May
NBS_Greyson's_Law
Texas
  "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...