PLATTSBURGH — Hannah's Hope will receive a huge boost from one of the nation's wealthiest women, if a $450,000 challenge is matched by volunteer donations.
Doris Buffett, founder of the Sunshine Lady Foundation and sister of billionaire investor Warren Buffett, has agreed to donate $450,000 toward the cost of an upcoming human clinical trial for children afflicted with giant axonal neuropathy (GAN), a rare central nervous system disease that impacts a child's ability to control movement of arms, legs and other parts of the body.
The trial, scheduled to begin in the spring of 2013, will cost an estimated $900,000, which means the Hannah's Hope Fund has to raise the remaining half in order to collect Ms. Buffet's donation.
"It's an all-or-nothing challenge grant," said Lori Sames, Hannah's mom and executive director for the Hannah's Hope Fund. "If we don't raise $450,000, we won't receive the matching funds. The full-court press is on."
MONEY RUNNING OUT
Lori and Hannah's dad, Matt Sames, who were both raised in the Plattsburgh area and now live in Rexford, north of Albany, first learned of their daughter's condition in 2008 and have since created the only public charity dedicated to the development of a therapy and cure for GAN.
The fund has raised more than $3.2 million toward research, but that money will be exhausted before the start of the clinical trial, in which Hannah will participate.
"The trial is a treatment," said Hannah's aunt Carrie Favaro from Plattsburgh. "It will not repair damaged nerves but should stop the disease from progressing any further."
Ms. Buffet had donated $500,000 toward the Hannah's Hope Fund a few years ago and met Hannah during the family's annual fundraising ball in 2011.
"An elderly woman from Niskayuna was watching a Sunday morning show about Hannah, and she took it upon herself to write to Doris Buffet," Favaro said of the initial contact Hannah's Hope had with the well-known philanthropist.
"(Doris) Buffet then called my sister and wanted to know more about Hannah. The next thing you know, she had offered her support."
"Doris Buffett is a true American hero," said Mr. Sames. "She is interested in saving children, saving lives and helping humanity. Her help isn't in the form of a handout but rather a challenge grant that, hopefully, rallies a lot of people around our cause."
HARDER TO WALK
Hannah, 8, has weakened over the last few years and is now using a walker to move from place to place, but her disposition remains upbeat and bubbly.
"She has an incredible sense of humor," Favaro said. "Everyone who knows her just adores her."
GAN is an inherited disease, and both parents have to carry the mutated gene. Hannah's two older sisters, Madison, 13, and Reagan, 10, do not have the condition, which afflicts only a few dozen children worldwide.
Local fundraising efforts to match Ms. Buffett's challenge begin with a Volley For Hope volleyball tournament at Saranac High School on Monday, Oct. 8. The day-long tourney featuring area teams begins at 9 a.m., and Hannah and her family will be on hand for the event.
Also, a major charity event will be held at the American Legion in West Plattsburgh on March 16, 2013, but details on that day's activities are still being planned and will be posted on the charity's website, www.hannahshopefund.org.
Although research has been targeted toward GAN, experts believe the therapeutic approach that will be used during the upcoming trial may also benefit people suffering from other neurodegenerative disorders, such as spinal muscular atrophy and ALS or Lou Gehrig's disease.
Thus far, Hannah's Hope Fund has raised nearly $94,000 toward the $450,000 goal.
Email Jeff Meyers: firstname.lastname@example.org
HOW TO HELP
To make a donation to the Hannah's Hope Fund, visit www.hannahshopefund.org.