Tobias Daniel is preparing for a contest. He’s going to run 6.2 miles through the woods.
The runners are off. They’ve left about 8 a.m. on a Saturday morning at the Atlanta Sportsplex pond on a mission to bring attention to the little known disease Superficial Siderosis.This is Atlanta’s second annual public service run.
Runners gets a special charge of energy when an endurance race starts. Here the pack of athletes is making a warm-up turn around a corner, heading for the official start line.
Smiles and happiness are on the faces Gary Daniel, seated, his wife Rori at right and retired attorney Leslie Fox. They are supporting the second annual Trail Grinder run to bring attention to Superficial Siderosis, of which Gary suffers.
Greg Beer’s electronic timing device is on and ready to record finishing times for a trail run. Beers is a lead organizer of the Trail Grinders run to publicize and support research for a little known disease.
Tanya Beers, owner of Coffee Crema and lead organizer of the Trail Grinder run in support of Superficial Siderosis research, is getting things ready for the early morning start Saturday.That’s relative Braxton Daniel, 7, who’s helping.
Area runs for Siderosis
Atlanta’s second annual Trail Grinder’s run achieved its objective Friday. The event’s purpose is to publicize a little- known disease Superficial Siderosis. One member of the local race family suffers from this disease.
Tony and Greg Beers are owners of Cafe’ Crema in Atlanta which is sponsor of the event now in its second annual occurrence.
Some 50 runners paid a $30, $40 or $50 entry fee to run the 5, 10 or 30-K trail with all funds going to the non-profit 501 (C) (3) Superficial Siderosis Research Alliance. This non-profit is registered in Wisconsin but has its research arm here as led by Vice President Rori Daniel of Linden.
A reason for participation was perhaps said best by runner and new Atlanta resident Kevin Matnog, a nurse for a local nursing home.
“I’m here because I want to be with people coming together for a purpose, that’s what I look for,” Matnog said Saturday as he warmed up. “It’s also something that’s healthy and helpful. It’s what I did at home in the Philippines, and now I want to do here. I love it.”
What is the nature of the research being proposed for Superficial Siderosis? Rori Daniel described a perspective she learned from attending a rare disease conference in Washington, D. C., four years ago.
“We are up against a struggle, but the research being proposed may have results for other neurodegenerative disorders such as Huntington’s, Parkinson’s, and Alzheimer’s. Researchers see similarities such as iron on the brain which is essentially what Siderosis is. Maybe remove the iron damage. We may can help others.”
Rori is also the caregiver for her husband Gary, a Siderosis patient.
The president of the Siderosis Alliance, Kyle Dempsey of Wisconsin, had this to say recently about local researcher Rori Daniel.
“It’s amazing to realize what Rori is doing to increase awareness,” Dempsey said. “She has a wonderful ability to navigate the medical world, and it’s amazing to think she can do so much from a local research standpoint. Because of technology, she’s able to talk with people across the globe. She’s first class, and I’ve not seen anyone like her.”
As for the number of persons affected with Superficial Siderosis so far, Rori said that four years ago the number of persons contacting the Siderosis website was few.
“But as awareness has increased we are getting several emails now. First, in 2014 we estimated 100 known cases. Now our lead physician Dr. Michael Levy, Massachusetts General Hospital, estimates 500 documented cases. And perhaps many others who have not been diagnosed.”