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Girl battling rare disease gets a boost in funds

ROUND LAKE -- Hannah Sames was in good spirits Saturday, as dozens of motorcyclists rode in her honor. You would never know by her smile but she suffers for Giant Axonal Neuropathy, a rare disease that results in progressive nerve death. Her family has been fundraising since her diagnosis, and so far as raised over $5 million.

"It's funded a novel gene therapy approach so these kids will be the first to receive a therapeutic gene to the spinal chord. We have three regulatory approvals, we have two, and we hope to have final approval from the third agency within the next six weeks. We really hope the first human is injected within the next 11 weeks," says Hannah's mother Lori Sames. 

Saturday's ride, was not organized just by Hannah's family.

"She really has changed my life in a sense and put a new perspective on my life," says Bri Schofield.

Schofield helps take care of Hannah, and introduced her one day to her uncle, Tom Adams. Tom suffered from terminal cancer, he and Hannah developed a fast bond. 

"We sat on the deck together and we just liked to chat," Hannah says. 

"When my uncle met Hannah he instantly fell in love with her, and just wanted to do whatever he could with his time left here," says Schofield.

So Adams helped put together the Tom's Ride of Hope. It was his final wish to help Hannah any way that he could. But, unfortunately he died two weeks ago, never getting to see his efforts play out. 

"He fell in love with her, and fell in love with Hannah's Hope Fund, and really wanted to make a difference in the life of Hannah and children around the world suffering from her disorder called Giant Exdonal Neuropathy," says Lori, Hannah's mother. 

"This is life saving. The hope is that it will stop the progression of the disease in the Central Nervous System. We are also working on approaches to treat the nerves in the peripheral nervous system. So, while we've come a long way, and we're close to starting a phase one trial we really have a long way to go," she adds.

We're told they will try and make this ride an annual event. There are many more fundraisers to come, if you'd like to see a list, or donate to Hannah's Hope Fund, click here

 
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