Event Videos

There’s no shortage of talent in the science and clinical space of Krabbe disease. KrabbeConnect believes it’s vital to honor an individual every year who has made a significant contribution(s) to Krabbe disease in one or more of the following areas: educating and improving methods to effectively recognize and diagnose Krabbe disease, advancing breakthrough research into novel treatment(s), andor improving the quality of life for patients through innovative research and clinical interventions.

Dr. Joanne Kurtzberg is an internationally renowned expert in pediatric hematologyoncology, pediatric blood and marrow transplantation, umbilical cord blood banking and transplantation, and novel applications of cord blood in the emerging fields of cellular therapies and regenerative medicine. Since 1990 she has served as the director of the Pediatric Blood and Marrow Transplant (PBMT) Program at Duke University Medical Center. The PBMT program has transplanted over 60 patients affected by Krabbe Disease. Dr. Kurtzberg's current research is focused on finding ways to use cord blood cells to help children with Krabbe disease and other leukodystrophies. To learn more about Dr. Joanne Kurtzberg please visit Duke University Medical Center.

We invite you to learn about the impact of her work at Duke University Medical Center from this impact video.

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Are you ready for the #curekrabbbe challenge? The Krabbe community of patients and their caregivers are challenged each day due to their Krabbe disease diagnosis. KrabbeConnect works to help families with these challenges by advancing research, providing family support, enhancing education, and raising awareness. KrabbeConnect believes in working together to help assure a better life for Krabbe disease patients yet, we cannot continue our work without your help! Please join us to #curekrabbe in the Portland to Portland 2022 Challenge. Visit KrabbeConnect by April 14th, 2022 to register.

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Did you miss the gala on Friday, September 24th, 2021? No problem, you can view it here now.

KrabbeConnect is truly thankful to be here, providing those directly living with Krabbe disease educational resources to make difficult decisions a bit easier, connecting them to rare disease experts, and participating in research efforts to help #curekrabbe. We hope you feel informed and inspired by this community working to improve education, awareness, and research for Krabbe disease. We invite you to consider a donation (https://krabbeconnect.org/donate/) to help advance our mission and work at KrabbeConnect.

Warm Regards-

KrabbeConnect Board of Directors

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Please join us live on October 10th, 2020 for our, "A Million Dreams," gala as KrabbeConnect highlights patient stories, embraces the generosity of our corporate sponsors, pays tribute to those patients diagnosed with Krabbe disease, and fundraises to the max to reach a day in which each patient can live a life free of Krabbe disease. As we gather safely from our homes, we want our community to know we are working harder than ever to unify work to #curekrabbe disease. KrabbeConnect cannot make this happen alone. We need the Krabbe disease experts, clinicians, researchers, family warriors, friends of the foundation, and our very important corporate sponsors to help change the lives of those born with this devastating disease. We guarantee you will leave this event feeling inspired, altruistic, and eager to follow our journey to success--A CURE!!

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