Linden family, Atlanta business lead effort for Siderosis

A Linden family and an Atlanta business are leading a nationwide effort to gain research into the rare disease Superficial Siderosis.

Last week, Wisconsin citizen Kyle Dempsey visited Caffe Crema in Atlanta to publicize the coffee shop’s second annual Trail Grinder run to support this rare disease effort. The run begins this Saturday at Atlanta Sports Park.

Dempsey, president of the 501(c)(3) non-profit titled Superficial Siderosis Research Alliance, excitedly explained his appreciation and support for the local public vision of Cafe Crema, its owners Greg and Tanya Beers, and Rori Daniel of Linden who is research director for the non-profit.

Superficial Siderosis is a rare neurological disorder. It is not well known. This is the difficulty that the Trail Grinder run and other events are trying to overcome.

“We’ve formed 501 C-3 to empower research,” Dempsey said. “Our goal is to raise awareness. We need the publicity to help with awareness because awareness drives research. If no one knows, there’s no research. You’ve got to have a starting point, and we’re amazed at what this public in Atlanta and Cass County are doing.”

Last year, following the first Trail Grinder run, the Beers presented a check of $3,000 to the appropriate support fund for Superficial Siderosis. Greg and Tanya have a relative with Superficial Siderosis who is Rori’s husband, Greg Daniel.

Kyle Dempsey’s family has a daughter diagnosed with Superficial Siderosis.

“We’ll do it again,” Tanya Beers said of the volunteer effort last year. “We know a lot more to do it bigger and better next time.” She’s saying the same now, even before the second run event is concluded.

The non-profit Siderosis Alliance is dedicated to funding research, improving patient’s quality of life and providing education and support.