Ellicottville, NY – The Hunter’s Hope Foundation will host the 15th Annual Family & Medical Symposium from July 30through Aug. 5 at Holiday Valley Resort in Ellicottville, NY.
Select researchers specializing in rare metabolic disorders, pediatric development, and newborn screening present the most current research findings and treatment options related to Krabbe and Leukodystrophies to families affected by these devastating diseases.
“The annual Family & Medical Symposium is very much like a family reunion for us,” said
Jill Kelly, co-founder of Hunter’s Hope Foundation and mom to Hunter Kelly, who suffered from Krabbe Leukodystrophy and passed away in August of 2005.
The Hunter James Kelly Research Institute, which is located on the fourth floor of the New York State Center of Excellence in Bioinformatics and Life Sciences, is a partnership between Hunter’s Hope Foundation and the University at Buffalo.
One primary focus of research at the institute is myelin repair, which is the protective covering of the nerves in the body that are damaged by Krabbe other Leukodystrophies, as well as in those who suffer from Multiple Sclerosis or stroke. Currently, a major part of this clinical initiative includes an ongoing study of children who receive a positive screen for Krabbe Disease through the New York State newborn screening program.
“Following children who receive a positive newborn screen for Krabbe but do not have the early infantile form of the disease can help increase our understanding of this extremely complex disorder,” said Jacque Waggoner, CEO of the Hunter’s Hope Foundation. “It is also vitally important to follow these children to ensure they have the opportunity for available treatments in the event they have a later onset of the disease.”
Because of this, for the first time this year, Hunter’s Hope is also welcoming a number of families from across New York State who received a positive screen for Krabbe. For these families, the Foundation is hosting a special roundtable session aimed at learning more about the family’s experience regarding receiving a positive newborn screen in hopes of improving the quality of information available as well as educating the families.
Additionally, on Saturday morning all attending families will have the opportunity to honor their children at the Symposium Every Step Walk. Each year, families write messages on balloons that are released during a special ceremony.
“I love the time of the balloons because it’s when you get to send a message,” says Jim Kelly, former Quarterback for the Buffalo Bills and Hunter Kelly’s dad. “I always put on mine that Hunter will always be my hero. He’s the little boy who changed my life, and definitely for the good.”
A major portion of the annual program is funded by the Wal-Mart State of Giving Grant, which has contributed over $300,000 toward the annual symposium program since 2008. Because of this grant, along with other support, including grants from the Buffalo Bills Youth Foundation, Hunter’s Hope is able to cover the vast majority of expenses for attending families, who often face financial hardship due to the cost of caring for their children. More information at www.huntershope.org.