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Every State - Taking Action for Expanded & Universal Newborn Screening
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Families affected by 
Zoey - Krabbe Leukodystrophy |
Families Taking Action
One 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 can paint a picture of why the need for expanded and univeral 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 can 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 contact our Family Invovlement Representative at unbs@huntershope.org.
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"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
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| Reesa Stutzman Arizona |
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“The need for this legislation was brought to me by a constituent whose daughter Jacquelyn passed away from Krabbe disease because she was diagnosed too late to receive potentially life-saving treatment. These diseases are devastating and we need to give parents as much information as possible so they can pursue all available medical options.” ~ California State Senator Tony Strickland *Pictured (Left to Right): Brooke Scott, Rod Scott, Kathleen Scott, Bella Scott, California Sen. Tony Strickland, Nicole Aldrian, Steve Aldrian; center - Trevor Aldrian (Krabbe Leukodystrophy) |
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| Jacquelyn Scott California |
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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. |
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| Liam Hammonds Illinois |
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"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 begining 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 |
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| Brady Cunningham Missouri |
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"I urge you to approve a broadened panel of newborn screening to include Krabbe and other lysosomal storage disorders, so that more parents and grandparents can be spared the horrors that we are living; so that Emma's life will have more purpose than the simple joys that every moment of her existence have brought to us, her family." ~ Excerpt from a letter written by Sherri Daniels, Emma's Grandma Learn how Emma's family told their story to legislators by reading the full letter... |
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| Emma Daniels New Jersey |
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"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 Learn more about how Tyler's family took action in New Mexico... *Pictured (Left to Right): Diego Arencon, David Heshley, Tyler McAdams, Jim Kelly, Michelle Grisham, Julie Allen (grandmother) |
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| Tyler McAdams New Mexico |
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"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 |
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| Hunter Kelly New York |
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Marshall Wilson was diagnosed with Krabbe Disease when he was 17 months old, just after the birth of his younger brother, Michael. At this point, the disease was already too far progressed for Marshall to benefit from the only available treatment, a cord blood transplant. Since Krabbe is a genetic disorder, Michael was also tested for Krabbe and diagnosed early, before he was symptomatic. Michael underwent a transplant and is a healthy and active toddler. These two brothers have same disease—one is vibrant and healthy, the other is fighting the devastating effects of a terminal illness—all because the state where they were born does not screen for Krabbe at birth. Learn more about how the Wilson’s are fighting to change Oregon's current NBS laws... *Pictured: (Left to Right):Marshall Wilson (Krabbe Leukoydstrophy), David Wilson, Tammy Wilson, Michael Wilson (Cord Blood Transplant, Krabbe Leukodystrophy), & Melaney Wilson |
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| Marshall & Michael Wilson Oregon |
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“I believe that my life was saved so that I can speak out for babies with Krabbe, who are unable Learn more about how Scarlett and Phil are making a difference in Tennesee... *Pictured
(Left to Right): Scarlett Measles (Cord Blood Transplant, Krabbe Leukoydstrophy), & Phil May |
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| Dylan May & Scarlett Measles Tennessee |
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"The Texas Senate on Thursday unanimously adopted a bill by Sen. Carlos Uresti that will |
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| Greyson Morris Texas |
