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.

Heather Arizmendi

Hello, my name is Heather Arizmendi and I am from Merrillville, Indiana. I am here to speak for my daughter, who was not given a chance to have her own voice. I am one very blessed Mama of 3 children, all affected by this terrible disease, Krabbe. My oldest daughter, Evelyn, was born September 6, 2014, and was the happiest, chunkiest baby I had ever seen. At about 5 months, she was no longer happy. She was losing all abilities, including her smile and was inconsolable. After months of misdiagnoses, when she was 14 months old, we learned that Evelyn had Krabbe Disease and that our perfect baby only had months left to live…

Sarai Taylor

My name is Sarai Taylor. My daughter, Anna Taylor, had Krabbe Leukodystrophy. Anna passed away on April 2, 2015, at 23 months old. Because of the toll Krabbe took on our daughter, the majority of her short life was spent with the inability to speak, eat, see, or move. We tried our best to engage with her and give her the best quality of life we could, though she remained like a living doll until her passing. Because Anna was not screened at birth, any possible treatment to halt the progression of this awful disease was not afforded to her.

Newborns in Kentucky no longer need to face that same fate, however. Just one day before Anna’s passing, the Anna Claire Taylor Act was ceremoniously signed into law. This law enacted the standard that all newborns in Kentucky would receive Krabbe Leukodystrophy screening at birth…

Phil May

My name is Phil May, and I live in Tennessee. My son, Dylan, was born in 2004 and died just before his 5th birthday in 2009. Dylan was a beautiful, happy, sweet little baby who was of course, loved unconditionally by me, my wife, and our two older sons. After starting to lose some motor skills, Dylan was eventually diagnosed with Krabbe disease at 8 months of age. For Dylan, that diagnosis came too late for any treatment. The doctors told us to take him home and make him comfortable until he died, which we should have expected to be between the age of 13 months and 2 years old. We were blessed that Dylan lived to be almost 5…

Kasey Feldt

Hello, and thank you to the committee for allowing me to speak on my experience on Krabbe Disease. My name is Kasey Feldt, and I am a Mom of a beautiful and strong Krabbe Angel, Dawson Luke Feldt. Dawson was born on July 16, 2019 and he was absolutely perfect. As the months went on, my husband and I noticed Dawson never gained head control. He often got sick, would throw up his food, lost his laugh and smile, and eventually started having muscle spasms. After months of testing, on February 24, 2020, we heard the words Early Infantile Krabbe Disease for the first time. Hearing that he would not live past two years old brought me to my knees and made me scream in pain, devastation, and grief. My son passed away 8 months later at the age of 15 months old.

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.