Local family raising money to spread awareness of rare disease

By John Gardner
The Surveyor

When Nick and Suzanne Leypoldt were told that their then 11-year-old son, Colin Leypolt, had an extremely rare disease they felt relieved that they had finally gotten a diagnosis–eight years after symptoms first presented. However, they were left just as helpless after learning more about Fahr’s Disease.

“It was a really lonely, terrifying feeling, not knowing what was going to happen,” Suzanne said. “Or how fast it was going to happen, or what their futures were going to look like.”

Colin is 15 now. His two younger brothers, Brock, 13, and Dawson, 9, have also been diagnosed with Fahr’s, as well. Neither Nick nor Suzanne has the disease.

And finding information about the rare disease was troublesome because of a lack of research and patients available. Colin and his brothers were only among approximately 30 other affected by the disease when diagnosed.

“There were maybe three research documents out there at that point,” Suzanne said. “There is very little knowledge or anything on the disease, but things have changed in the past four years.”

But, the Leypoldts are trying to change that through the Fahr Too Strong Foundation; a nonprofit they helped start to spread awareness about this disease. The public is invited to join the Fahr Too Strong Foundation for its first fundraiser in recognition of National Rare Disease Day, Saturday, Feb. 28, from 4-8 p.m. at 1933 Brewing Company located at 4025 South Mason St. Suite C, in Fort Collins. There is a silent and live auctions planned for the event for baskets full of goodies available for people to bid on. A $10 donation will also get $1 off drinks for supporting this cause.

Money raised for the foundation will go to providing awareness and support for affected families. It will also go to help create outreach programs to help connect affected families with knowledgeable doctors from around the globe.

“There are only three researchers in the world right now that are doing research, so we’re trying to get people connected to those people,” Suzanne said.

They also would like to create a database for all published information regarding the disease to be compiled in one place to help consolidate the available information.

“If we can consolidate everyone together that would be a more streamlined approach for everyone,” Suzanne said.

More information about the Fahr Too Strong Foundation of Saturday’s fundraiser can be found at the organization’s facebook page.