TIFTON —
If the public votes for Hannah’s Hope in the Pepsi Refresh Project, Lottyn Bates, 11, could benefit from a $250,000 grant that could save his life and those of other patients with the same illness.
Bates, of Tifton, has GAN (Giant Axonal Neuropathy), a neurological disorder similar to Lou Gehrig’s, that strikes in childhood and progresses rapidly, taking away the ability to walk, talk and breathe. His speech is compromised because of partial paralysis of his vocal cords. He is wheelchair bound and on a feeding tube, but he has full cognitive abilities. He began showing symptoms of the disorder when he was 2 1/2.
Saturday, the Hannah's Hope Fund was in third place to receive a $250,000 grant from the Pepsi Refresh Campaign. The organization must be in second place no later than midnight Tuesday to receive the grant.
“Our family is hoping to reach out to the amazingly proactive community of Tifton to ask for your vote for a worth cause close to our hearts,” said Lottyn’s mother, Magaen. “We are on target to begin a clinical trial in 2011.”
Bates wrote in a letter to The Tifton Gazette that the FDA requires extensive studies before approving the start of a human trial. Hannah’s Hope Fund has already raised money to fund the manufacture of the drug for both the pre-clinical studies and the clinical trial, but additional funds are needed to pay for the toxicology (safety) studies the FDA requires. GAN patients will likely be the first disease community to receive a therapeutic gene to the spinal cord.
There are three ways to vote for Hannah’s Hope.
• On the Web: go to http://www.refresheverything.com/hannahshopefund
• On Facebook: Make sure Facebook is open in another window and go to http://www.refresheverything.com. Then, choose “Browse Ideas and Vote” and then choose “Sign In” in the lower left portion of the screen located just under the word “Welcome!” When you get to the sign in dialog box, chose the option in the upper left hand corner to “Log in using Facebook.” Log in and search for the cause using GAN and cast your vote.
• Text 101885 to 73774.
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