It should not be this hard to save a child’s life…
You can help! Take action here.
Below you will find some of the Public Comments that have been made by families affected by Krabbe Disease. If you read them, you will understand the urgency of taking action to ensure every child is screened at birth for Krabbe Disease.
Jill Kelly
Since 2009, when this committee voted against adding Krabbe to the RUSP, 136 children that we know of were born in the U.S., and like Hunter, diagnosed too late to receive treatment. 136 children died. 136 families were devastated like ours. Those children should still be here. Those children should have been screened at birth for Krabbe so they could get a chance to live.
Click here to read Jill's comments
Michael Wilson
The reason why all babies across the country should be screened for Krabbe is because if they don’t catch it in the early stage of the disease, they will not make it. They will live with the disease and die in a short time. If they are tested and treated, then it means they have a better chance of living their entire life. I am proof that if treated they can live their best life just like me. My brother was not given that chance or that treatment even though it was available.
Click here to read Michael's comments
Lana Grujicic
I hope you really consider all of the facts and our testimonies and make the right decision for our nation’s children. A vote against Krabbe means that more children will suffer and die – you have the power today to give them a chance at life.
Click here to read Lana's comments
DeRossett Family
Tygh’s mother, Amanda DeRossett shared her story at the November 3, 2022 ACHDNC Meeting. Without Kentucky screening for Krabbe disease, Tygh’s life would be much different.
Click here to read Amanda's comments
Bonacorsa Family
Sofia’s mother, Kelly Bonacorsa shared her story at the November 3, 2022 ACHDNC Meeting. It was too late for Sofia to have treatment, because Virginia voted against screening for Krabbe disease. Sofia’s life could have been saved.
Click here to read Kelly's comments
Jacque Waggoner
From Jacque’s comments: “Since 2009, when this committee last reviewed Krabbe and voted against its inclusion on the RUSP at a vote of 8 to 7, we know of 136 children who have been born in the U.S. and symptomatically diagnosed with Krabbe Disease, too late for disease altering treatment.”
Click here to read Jacque's comments
Webb Family
Christin Webb shared her family story in public comments at the August 2022 ACHDNC meeting to help the committee understand the importance of adding Krabbe disease to the Recommended Uniform Screening Panel.
Blackwell Family
Karlita Blackwell shared her family story in public comments at the May 2022 ACHDNC meeting to help the committee understand the importance of adding Krabbe disease to the Recommended Uniform Screening Panel.
Click here to read Karlita's comments
Spencer-Witczak Family
Natasha, Kenan’s mom, shared her family story in public comments at the May 2022 ACHDNC meeting to help the committee understand the importance of adding Krabbe disease to the Recommended Uniform Screening Panel.