Aussie finishes 24-day trek to raise money for rare disease foundation in Maryland
BETHESDA, Md. (WJLA) — Reporter's Notebook: On the opposite side of the world, 52-year-old ultra runner Shane James completed a 24-day trek Friday to benefit a foundation in the DC region, hoping to find a cure for a rare disease he shares with Dr. Tara Zier of Bethesda.
In 2013 Dr. Tara Zier earned her third black belt and was running a successful dental practice. Then unexplained, unimaginable pain crept into her life and never left.
Dr. Zier says, “I was on a mission. I’ve got to figure this out. I’m going down here.”
Dr. Zier was eventually diagnosed with Stiff Person Syndrome or SPS: a neurological and autoimmune disorder that wreaks havoc on muscles, causing spasms strong enough to break bones.
“I feel like I’m in the ring every morning when I wake up. I can get up out of bed. I can go to the bathroom. I can eat. But you are fried and then you go back lie down again because everything you do, even the simplest things, are really taxing," says Zier.
Dr. Zier left her dental practice and started The Stiff Person Syndrome Research Foundation to raise money for more humane treatments and maybe, one day, a cure.
She recently hatched a plan with Shane James, an Australian ultra-runner, who also has SPS.
"You get two crazy people together they are going to come up with a crazy plan," says Zier.
They came up with a epic, multi-day event for James to attempt to raise awareness and much needed research funds for SPS. They dubbed the event Traversing Tassie.
James traversed the top of Tasmania, where he lives, twice. Nearly 550 miles, averaging about a marathon a day. He pushed past pain that would land most in the ER, finishing early Friday morning in the shadow of a lighthouse.
“It was a pretty cold and windy night and the journey has been like that. It’s been tough at times but also pretty amazing and beautiful,” remarked James.
What James didn’t know if that I was interviewing him at Dr. Zier’s home. This would be their first interaction since James completed his 24-day trek.
“How you doing?" he asked Zier.
She replied, “I don’t know. I’m crying.”
James journey raised 20-thousand dollars for Dr. Zier’s foundation, money going directly to research SPS at Johns Hopkins. Dr. Zier says her foundation has donated a total of 50k to The Stiff Persons Center at Johns Hopkins.
For all her bad days battling SPS, this would not be one of them.
