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Hunter's Hope Foundation, UB Establish Research Institute to Study Krabbe Disease, Related Conditions

By Lois Baker

Release Date: May 21, 2004

BUFFALO, N.Y. -- Hunter's Hope Foundation and the University at Buffalo today announced establishment of the Hunter James Kelly Research Institute, which will focus on research into Krabbe Disease -- the fatal nervous system disorder that affects the 7-year-old son of former Buffalo Bills quarterback Jim Kelly and his wife, Jill -- and related diseases.

The institute that bears the name of the Kellys' son will be part of the New York State Center of Excellence in Bioinformatics and Life Sciences on the Buffalo Niagara Medical Campus. The institute's director will be on the faculty in the Department of Neurology in the UB School of Medicine and Biomedical Sciences.

Under an agreement between the foundation and UB, all research funded by the foundation at the Hunter James Kelly Research Institute and elsewhere will be coordinated through the institute, which will be funded by both the foundation and the university.

The foundation will provide a salary supplement for the institute's director, as well as funding for institute expenses. The agreement proposes that Hunter's Hope Foundation will establish a $3 million endowment to be deposited with the University at Buffalo Foundation to support the institute.

Hunter's Hope was established in 1997 by the Kelly family to promote public awareness of the category of diseases called leukodystrophies, which includes Krabbe Disease, and to fund research into early detection and treatment. To date, it has awarded more than $3.8 million for research.

"The Hunter James Kelly Research Institute is more than a dream come true for our family and Hunter's Hope," said, Kelly, a member of the Pro Football Hall of Fame.

"When we started the Hunter's Hope Foundation seven years ago, our mission and goals were set, our passion and determination overwhelming and our vision far-reaching. We could never have anticipated at that time how blessed we would be today."

Jill Kelly added: "Our heart's desire has always been to make a life-changing difference in the lives of these precious children. We are so thankful that we have been given this amazing opportunity.

Our family would like to thank all of Western New York for your continued love, prayers and support for the Hunter's Hope Foundation."

Margaret W. Paroski, M.D., interim vice president for health affairs at UB and interim dean of the UB School of Medicine and Biomedical Sciences, thanked the Kelly family and the foundation for their commitment to advancing research into Krabbe Disease and related disorders.

"As a neurologist, I'm acutely aware of the devastation wreaked on children and families affected by leukodystrophies such as Krabbe Disease," she noted. "The new institute will give UB the opportunity to make significant contributions to medical research is this field, which we hope will lead eventually to life-saving therapies."

UB President John B. Simpson said the university is "is very pleased to partner with the Hunter's Hope Foundation in the creation of the Hunter James Kelly Research Institute.

"I very firmly believe that the formation of a dedicated research institute at UB will prove to be of enormous benefit in the investigation of Krabbe Disease, since it will allow for efficient and expert coordination of current research and discovery, as well as for the creation of new and advanced approaches to understanding the science involved in this disease," Simpson added.

"I salute both the Hunter's Hope Foundation, as well as the entire Kelly family, for their vision and commitment to the formation of this institute at UB."

Jacque Waggoner, board chair of the Hunter's Hope Foundation and Hunter Kelly's maternal grandmother, said the foundation's vision for the new institute dates back to the summer of 2002.

"In the fall of 2002 we shared our vision with the University at Buffalo. The university offered to house the institute in their planned Center of Excellence in Bioinformatics and Life Sciences and to help us find a director to lead the institute. We thought it would take many years of planning and fundraising for our dream to come true," said Waggoner. "When we learned that our research institute would be part of the Buffalo Niagara Medical Campus, an incredible collaboration between UB, Hauptman-Woodward Medical Research Institute, Roswell Park Cancer Institute, and the greater Buffalo medical community, we were very pleased and very excited."

Krabbe Disease is a genetic disorder that manifests itself in children shortly after birth. It leads to deterioration of myelin, the brain's white matter that forms a protective sheath around nerve fibers and allows nerve impulses to travel unimpeded throughout the body. The research conducted at UB will focus on studying remyelination techniques aimed at correcting the condition. Research at other sites will focus on studying the biology and pathophysiology of Krabbe Disease with the goal of developing effective treatment strategies.

The research on remyelination also will aid persons with multiple sclerosis, stroke and other diseases characterized by destruction of the brain's white matter.

The director for the Hunter James Kelly Research Institute is expected to be hired by September 2005. Norma Nowak, director of scientific planning for the Center of Excellence in Bioinformatics and Life Sciences and UB associate professor of biochemistry, will head the search.