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Atlanta trail run fundraiser to help battle rare neurological disorder

By Julie Parr

Atlanta trail run fundraiser to help battle rare neurological disorder

ATLANTA, Texas - The family of an East Texas man diagnosed 10 years ago with a rare brain and spinal cord disorder hopes to raise awareness and find a cure.

The community of Atlanta is rallying together this month for a trail run fundraiser to benefit research efforts for those diagnosed with superficial siderosis. Gary Daniel learned of his diagnosis in 2014.

The neurodegenerative disorder is acquired through accidents, surgery, or trauma. It affects the brain and spinal cord.

Daniel's wife, Rory, says there's no cure, which leaves patients and families, desperate for support and resources.

"It's really a devastating, progressively disabling disorder," said Daniel.

Some of the symptoms of superficial siderosis include, phantom smells, as well as, loss of hearing, memory and balance.

Daniel says it's often mistaken for other diseases such as Parkinson's, Multiple Sclerosis or Multiple System Atrophy. The disorder affects less than one in three million people in the U.S.

"In 2014, there were 100 identified cases in the United States, and as of this last year, our patient registry has over 500 documented cases with more being identified every month," said Daniel.

Daniel's niece, Tanya Beers, has sponsored a trail race fundraiser called Trail Grinder for the past three years.

"We're bringing the community together, raising awareness and raising money to help the cause," said Beers.

Beers believes money raised from the event could help patients, like her uncle, receive more treatment options and an improved quality of life.

Organizers hope to raise around $5,000 in the race. All of the proceeds will go towards the Superficial Siderosis Research Alliance.

The Trail Grinder 5-K, 10-K and 30-K race will be held on Sept. 28 at the mountain bike trail in Atlanta, Texas.

For more information on how to donate or register to run, visit the Trail Grinder website.

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