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.

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.

Anna Grantham

Anna Grantham is the Director of Newborn Screening for the Hunter’s Hope Foundation. Hunter’s Hope first nominated Krabbe Disease for inclusion on the recommended uniform screening panel in 2007, which resulted in this committee’s vote of 8 to 7 against recommending Krabbe for the RUSP in 2009. Since then, we have worked tirelessly to systematically fill the evidence gaps provided to us by this committee.

Dr. Joanne Kurtzberg

My name is Joanne Kurtzberg and I am a pediatric transplant physician who pioneered unrelated cord blood transplantation for the treatment of KD. I testified here a few months ago on the day I expected the ACHDNC to vote to recommend the addition of KD to the RUSP. Unfortunately, that did not occur so I’m back today to address some of the perceived gaps that may have prevented some of the committee members from voting in favor of adding Krabbe disease to the RUSP.

Vanessa Werner

Hello, my name is Vanessa Werner. First, I wanted to thank all of you for your time and the opportunity to share our story today. I’m a parent to a beautiful 17-month-old boy named Damon (also known as DJ). At 16 days old, DJ was diagnosed with Infantile Onset Krabbedisease, and this was only caught at such an early age because he was flagged via newborn Screening.

Lesa Brackbill

My name is Lesa Brackbill and my daughter, Victoria, died from Krabbe Disease in 2016. I can assure you that I speak today from more than just the parental perspective – I know the science, I know the data, and that has informed what I will say today.

Elisa Seeger

My name is Elisa Seeger and I am the founder of the ALD Alliance. I wanted to share some thoughts, concerns, and hopes for this Committee and the future of newborn screening.

Click here to read Elisa'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.

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.

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.

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.”

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.

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.