Hannah's Hope to hold Giving Day benefit
On Monday, Nov. 11, supporters of Hannah's Hope Fund are launching a Cyber Giving Day benefit for the charity.
Money is being raised to pay for therapy development for kids suffering from a rare disease called Giant Axonal Neuropathy or GAN.
Donors can visit hannahshopefund.org/donate to contribute.
The donation goal for the event is $500,000 and will go to the scientific team and the studies needed to start a human clinical trial for the condition.
A gene therapy was developed by Dr. Steve Gray and the Hannah's Hope Fund scientific team 5 years ago that treated the central nervous system and 12 children have been treated to date. This next therapy will be focused on the automatic nervous system which helps regulate breathing and swallowing, among other functions.
Hannah's Hope Fund was formed more than 11 years ago when then 4-year-old Hannah Sames was diagnosed with GAN. Her parents, Matt and Lori Sames, started the charity and raised more than $10 million to develop the gene therapy that Hannah was treated with 3 years ago. Other rare diseases are now using this therapeutic approach.