The University at Albany campus was "thrilled" upon learning late Wednesday that the Hannah's Hope Fund was one of the top two finalists in the $250,000 Pepsi Refresh "Good Ideas" Challenge to advance clinical trials by the FDA to help find a cure for giant axonal neuropathy (GAN).
In March 2008, Hannah Sames, now six years old, was diagnosed with GAN -- a rare "orphan" genetic disorder. Her family subsequently established the Hannah's Hope Fund to attract funding to study, research and develop novel methods to address the disease. An orphan disease is so designated when its rarity provides little financial incentive for research into its cure or treatment.
UAlbany students rallied behind the Capital Region family to push the Hannah's Hope Fund in the national competition. As of last Thursday, Hannah's Hope was ranked #5 in the nationwide Pepsi Challenge, before UAlbany's students mobilized and got involved. Committed parents inspire students UAlbany President George M. Philip said, "I am absolutely thrilled for Hannah's family. Matt and Lori Sames are truly committed parents who have worked tirelessly for their daughter and others afflicted with this deadly disease. They are an inspiration to our University community and the entire region.
"I also am enormously proud of our UAlbany students who rallied behind Hannah and her family. Our students worked night and day over the past week to build support for the cause. Their enthusiasm and compassion in helping the Sames family is a source of great pride to this University."
President Philip added, "It's important to note that UAlbany would not have been involved, but for one instrumental person. I want express my deep gratitude to Senator Kirsten Gillibrand who connected the University with Hannah's family earlier this year, as well as for her efforts in Washington D.C. to secure federal funding for our scientists to advance orphan disease research, such as GAN."
Families deserve hope UAlbany student government president Justin Wax-Jacobs said, "As the representative of the University at Albany student body, the Student Association is so proud to have helped Hannah Sames and her family in the Pepsi competition. 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."
UAlbany students rallied in support of Hannah Sames, who is suffering from a rare genetic disorder. (Photo Mark Schmidt)
Students worked nonstop to raise votes UAlbany students worked nonstop to raise votes since learning of Hannah's Hope. Students launched a comprehensive promotional campaign that involved door-to-door visits in residence halls, e-mails and text messages, thousands of flyers, Facebook messaging, and engaging student groups to advance Hannah's Hope in the Pepsi Challenge. This past Sunday, the UAlbany Student Association hosted its annual block party to welcome the University’s newest students. During this time, the Student Association urged students to vote for the Hannah's Hope Fund. Hannah's parents, Lori and Matt Sames, joined by UAlbany President George Philip and student government president Justin Wax-Jacobs, asked the campus' newest students to help make a difference for the local six-year-old and others afflicted with this disorder. Justin Wax-Jacobs also visited Albany Mayor Gerald Jennings to urge him to support Hannah's Hope.
On Tuesday evening, the last night of the competition, UAlbany students redoubled their efforts upon learning that Hannah's Hope dropped from 1st to 3rd place with only an hour and a half remaining in the competition. They reached many of the 7,200 students who live on campus, working until the contest deadline of midnight.
"Orphan" diseases need funding Lori and Matt Sames, founders of the Hannah's Hope Fund, said, "The support of the entire University at Albany community is very much appreciated and the push we needed to get us to one of the top spots 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. Close to 7,000 rare diseases have been identified, and about 25 million people in the U.S. are afflicted by a rare disease, also known as an orphan disease. Rare diseases go untreated largely because industry investment to find a cure is not economically feasible, creating insufficiently fiunded studies and obstacles to orphan drug approval.
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