Five-year-old Hannah Sames knows she's special and that's why she has an organization named after her: Hannah's Hope Fund.
What she doesn't know is that she suffers from the rare genetic disorder Giant Axonal Neuropathy (GAN), which has no cure, no treatment, no clinical trial and no ongoing research. She doesn't know that her fund is rapidly growing because of the hard work of her parents, strangers and other families affected by the disease, who raise money and awareness so that research progress can be made.
Hannah's parents know that she may soon start asking questions about why she falls down so much. They hope by then, they will have more answers than doctors had for them when she was diagnosed two years ago.
To get these answers, they need money, and that's why a benefit concert, The Big Rock Show, will rock out Northern Lights on Saturday, Jan. 23. Local bands like Ten Year Vamp, Random Axcess, Byrds of Prey, Emma Ate the Lion, Full Throttle, Yellow Dog and Phil Barrett and the Chris Dollard Trio will entertain in Hannah's honor. The opening performer is Anthony Gargiula, an 11-year-old who has opened for the Jonas Brothers.
Hannah's mother, Lori, said this event is one of three between now and mid-February that will hopefully help raise at least $500,000. That's the number that the national Sunshine Lady Foundation has promised to match as part of a six-month grant challenge. Funds raised are currently at about $425,000 and if the target amount is reached, that would mean that Hannah's Fund would receive $1 million. Add that to the roughly $900,000 raised since the fund's inception two years ago, and Lori said that could go a long way.
"With that funding, we hope to start a clinical trial hope to start in 2011. We're working with a scientific team and a collaboration with University of North Carolina at Chapel Hill, Emory University, Columbia University and researchers from Quebec and France," said Lori. "There's a sense of urgency to really try to make this happen as soon as possible, but we have to make certain its safe; it's a delicate balance. They make us do extensive toxicology studies to determine safety, and these FDA requirements are really what keep emotional families grounded."