The Issue: Limited Treatments for Youth with GAN
Giant axonal neuropathy (GAN) appears as a result of genetic dysfunctions in the nerve cells. Infants or young children with GAN may have trouble walking and can later develop problems with their hearing, vision, strength, and reflexes. As the disorder progresses, the brain and spinal cord can become affected, deteriorating mental function and control of body movements. There is no cure for this rare condition, and it gains little attention from pharmaceutical and biotechnology companies.
The Campaign: Funding Travel for a Clinical Trial
If this Grassroots campaign raises $500, then Hannah's Hope Fund (HHF) can fund transportation for a child with giant axonal neuropathy to a clinical trial. Each additional $500 raised will fund transportation for another child. The HHF scientific team has developed a gene-replacement therapy they believe will save the central nervous system of patients with GAN. Doris Buffett, founder of the Sunshine Lady Foundation, has offered a challenge grant to pay for a human clinical trial, but HHF still needs funds to transport patients to the trial.
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Hannah's Hope Fund
Lori and Matt Sames founded Hannah’s Hope Fund (HHF) in 2008 when their 4-year-old daughter was diagnosed with giant axonal neuropathy (GAN). They set up an office at their kitchen table to raise funds to help treat and cure GAN. Over time, HHF expanded into an internationally recognized organization that mobilizes volunteers and sponsors fundraising events that range from lemonade stands to galas. Through their efforts, research into GAN has grown exponentially. Before HHF began, only one doctor worldwide was studying GAN, but now scientists have developed gene-replacement therapy that they believe will save patents’ central nervous systems. They have started human clinical trials to test the treatment and seek a cure.