Hunter James Kelly Research Institute
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 Krabbe and other 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).
All 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.
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.
Jill Kelly accepts the Samuel P. Capen Award from UB on behalf of Hunter Kelly & Leukodystrophy 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
See excerpt from the program and learn more about the Samuel P. Capen Award
The Boy in the Neighborhood
The Vogt Family Foundation presenting the “Boy with a Heart of Hope” in honor of Hunter Kelly.
"He may not be able to speak audibly, but let him speak volumes of inspiration. When youmare discouraged, may the 'Boy' encourage you. May we all work together to find those solutions for Krabbe and the other diseases that steal the joy we were
created to have."
Read the full presentation of Boy with the Heart of Hope finding his place in the neighborhood...
The Inaugural White Coat Tour of the HJKRI
March 8, 2012
The evening included an exclusive four part tour of the Center of Excellence (CoE) in Bioinformatics and Life Sciences. Tour stops included the SuperComputer Machine Room, the 3D Visualization Room, an the 4th Floor of the CoE, which occupies the Clinical and Basic Science Researchers affiliated with HJKRI.
If you or someone you know is interested in touring the Hunter James Kelly Research Institute, please email firstname.lastname@example.org.
Click the photo for an album of evening highlights.