Group helps those with rare diseases aim for new heights

A local nonprofit focused on helping people with rare diseases achieve extraordinary physical feats is gearing up for a trek to the top of White Mountain, the third highest peak in California.

Sacramento resident Sean Baumstark, 37, and his team of seven others will begin the hike Friday. Baumstark, who was diagnosed with a rare muscular condition known as Friedreich’s Ataxia in 2007, founded the nonprofit organization de:terminence -- a combination of the words determination and resilience.

Baumstark compares de:terminence to the Make-A-Wish Foundation. But instead of arranging trips to Disneyland, his team aims to improve the lives of individuals affected by rare diseases through physical achievements.

“People dream about climbing Mount Whitney or ... participating in a marathon, but they don’t have legs or they don’t have the physical ability to do (so),” he said. “An organization like mine comes in and we help them get the equipment they need, whether that’s an adaptive wheelchair or an adaptive bike. We provide a team of people to run with them, to push them, to carry them, do whatever we can.”

Baumstark was diagnosed with Friedreich’s Ataxia in 2007. The disease causes pro- gressive damage to the nervous system and causes people to use a wheelchair to get around.

The year after Baumstark was diagnosed with Friedreich’s Ataxia, he ran a half marathon in the California International Marathon, biked from Sacramento to Las Vegas and ran with the Olympic torch leading up to the 2008 Beijing Summer Olympics.

He also participated in the coast-to-coast Race Across America relay with a team including his friend Kyle Bryant, who also has Friedrich’s Ataxia. Their participation in the race was the subject of the 2015 documentary The Ataxian, which received much critical acclaim.

Today, about 11 years after his diagnosis, Baumstark is still upright and “fairly independent.”

“I was told by a doctor that someday I wouldn’t be able to walk on my own or be able to run,” Baumstark said. “I decided to begin doing things in the moment while I still had the ability. I began riding a bicycle more often, I began hiking up some crazy mountains and I began being a part of some crazy adventures.”

A team from de:terminence attempted to climb Mount Whitney and White Mountain in 2008 and 2009, but those attempts were not successful. This time, the team is more organized.

Team de:terminence eventually plans to summit all 14 of California’s peaks that top 14,000 feet in height.