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.`
Lori said when she dove into the science of GAN, it `was like peeling an onion` and took perseverance to understand everything. What she found out wasn’t a lot, but it fueled her desire to make more information available.
`We realized the science is there to treat many of these ravaging, rare disorders, but funding and attention to these disorders is what’s absent. We then realized our potential to save these kids and then had a feeling of panic when we realized how much money we needed to raise ` but we’re doing it,` she said.
Hannah’s Hope Fund is the only organization in the world devoted to GAN. By providing a network of support and hope, Lori has brought families from the U.S., Belgium, Scotland, Germany, France, Canada and beyond, together.
`Whenever a family finds us and sends a picture of their child, you just weep and immediately fall in love with these families and children. It is a heavy burden because so many families are depending on us to secure funding and help find answers,` Lori said.
People personally affected by GAN and others who aren’t devote time and energy to running and growing Hannah’s Hope Fund. Having so much help allows fundraisers and events to occur that would otherwise be impossible.
`It’s really moving when people choose to get involved and really choose to step out of their comfort zone and take more on. We’re all so busy with careers and children and trying to have quality family time, yet people are adding more to already busy plates to help,` said Lori.
Ritch Adams is one such supporter. He met Hannah’s family at an event last summer. Their drive and dedication are why he’s a board member of Hannah’s Hope Fund.
`It’s important as a community to always step up and help any family in need because you never know when it’s going to be you or your family who needs support. You cn’t do it all on your own,` said Adams, vice president of investments at Sunmark Federal Credit Union.
This is the first major event he’s organized himself and while he said it’s been a ton of work, community support has pushed it along.
`There’s no shortage of people that want to help out,` said Adams, who plays in the band Random Axcess with his wife.
Two more events are planned to reach $500,000 by Feb. 15. An Outback Steakhouse luncheon and raffle is planned for Jan. 30 and the `Hope and Love Ball` is Feb. 6.
For information, visit www.hannahshopefund.org.
“