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UAlbany Teams Up with Capital Region Family to Advance Research into Rare Disease Through Pepsi Refresh Good Idea Contest
UAlbany is helping generate support for Hannah Sames, a six-year-old from Rexford, N.Y. who has giant axonal neuropathy.
ALBANY, N.Y. (August 28, 2010) -- UAlbany’s researchers from the RNA Institute and the Cancer Research Center, in collaboration with scientists from the New York Neural Stem Cell Institute, are teaming up with the Capital Region family of six-year-old Hannah Sames to raise awareness and funding to develop a systematic approach to discover therapies for rare diseases, in particular Giant Axonal Neuropathy (GAN).
UAlbany President George Philip said, “The University at Albany’s faculty and students are enormously proud to support Hannah Sames and her family. Our scientists are partnering with Hannah’s Hope Fund to attract new research funding aimed at developing novel approaches to address orphan diseases, such as GAN. Our UAlbany community looks forward to continuing to work with the Sames family in the weeks and months ahead as they strive to find a cure for their daughter and others afflicted by GAN.”
In addition, UAlbany’s Student Association launced a campaign to generate support for Hannah’s Hope Fund in the Pepsi Refresh “Good Idea” Contest. The resulting online and text-message votes from UAlbany made a difference in the Fund's second place finish, which secured an award of $250,000 from Pepsi on September 1.
UAlbany student government president Justin Wax-Jacobs said, “As the representative of the University at Albany student body, the Student Association is pleased to support Hannah Sames and her family in attracting research funding to find a cure for GAN. As the future leaders of this country, it is our responsibility to make sure that these efforts help people to be successful in their endeavors to find cures for diseases that have been deemed unimportant. Families with children like Hannah who suffer from this rare and fatal disease deserve the same hope that all medical research gives to people with general illnesses.”
Lori and Matt Sames, Co-founders of Hannah’s Hope Fund said, “The support of the entire University at Albany community is very much appreciated and the push we need to get us to the #1 and #2 spot necessary to secure the Pepsi Refresh “Good Idea” funding. This money will go a long way in paying for the studies required by the FDA to initiate a clinical trial.”
A disease is "rare" if fewer than 200,000 people in the United States have it. There are close to 7,000 rare diseases and about 25 million people in the U.S. have afflicted by a rare disease, also known as an orphan disease. Rare diseases go untreated largely because the industry investment to find a cure is not economically feasible, there are obstacles to orphan drug approval or they are poorly studied. For more information regarding rare disease visit: http://www.nlm.nih.gov/medlineplus/rarediseases.html.
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