From the inception of Hunter’s Hope in 1997, an overarching goal of the Foundation has been to fund research into the cause, prevention, treatment and clinical care for children suffering from Leukodystrophies.

To that end, Hunter’s Hope entered into an agreement in 2008 with the University at Buffalo School of Medicine, to create the Hunter James Kelly Research Institute (HJKRI).

Foundation funded research, including both clinical and basic science, is coordinated through the Institute, which is located in the New York State Center of Excellence in Bioinformatics and Life Sciences (CoE), a prominent part of the Buffalo Niagara Medical Campus. Learn more about the Hunter James Kelly Research Institute on the University at Buffalo website.

Ultimately, the mission of the HJKRI is to find better treatments and a cure for those suffering from Krabbe and Leukodystrophies.

In order to accelerate advancements and also learn more from those affected by the disease today, the HJKRI, led by Lawrence Wrabetz, MD, incorporates both basic science and clinical science programs.

Basic science research focuses on the study of myelin and its diseases by exploring animal and cellular models to understand how myelin is formed, how it is damaged in disease, and how it may be repaired. Myelin is the fatty insulation around axons (the wires of the nervous system) in the brain, spinal cord and nerves. In particular, the HJKRI studies the mechanisms of Krabbe Disease in order to formulate therapies.

Clinical science research analyzes information revealed by newborn screening for Krabbe Disease and other Leukodystrophies. The World Wide Registry for patients with Krabbe Disease aims to improve diagnosis and prognosis, and to provide outcome measures for clinical trials.

This integrated approach, together with a critical mass of resources and investigators, will generate information that will promote effective treatment strategies not only for children with Leukodystrophies, but also patients with Multiple Sclerosis, stroke, neuropathies and other diseases in which myelin is damaged.

Hunter’s Hope also funds extramural research conducted by the world’s leading Leukodystrophy experts.

Each year, we gather the world’s leading Leukodystrophy doctors and researchers to discuss their progress and make further advancements at the Annual Hunter’s Hope Family & Medical Symposium.  To learn more about this important meeting, click here.

To learn more about the HJKRI, please click here.


On Behalf of the Children

Jill Kelly accepts the Samuel P. Capen Award from UB on behalf of Hunter Kelly & Leukodystrophy children and their families. The Association’s most prestigious honor, the community leadership Capen Award recognizes notable and meritorious contributions to the University and its community.

“This is more than a dream for us, it is a culmination of all that we had hoped for, so that other families with children diagnosed with Krabbe would never have to experience what we have as a family.” ~ Jill Kelly

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