Students run a marathon to finish with friend’s cure

Sean Baumstark, recently diagnosed with Friedrichs Ataxia, inspires Sacramento State students and alumni to participate in a marathon focused on finding a cure.:


Sean Baumstark, recently diagnosed with Friedrich’s Ataxia, inspires Sacramento State students and alumni to participate in a marathon focused on finding a cure.:

Amanda Pollard

A few months ago, Sacramento State senior and former member of the women’s rowing team, Ashley Loucks, decided to do something she never thought she would. She decided to run a marathon.

“I used to think people who wanted to do this were sick in the head. There was no way I’d ever do it. I hate running,” Loucks said.

But as Loucks found out in May 2007, anything extraordinary that someone decides to do may not just be for fun. It may be to save a life.

Hope takes on many faces. For some, it’s a doctor with a cure. For some, hope is being able to conquer something you never dreamed possible. For those involved in the organization de:terminence, hope comes in a human form, and his name is Sean.

A little more than a year ago, 27-year-old Sean Baumstark, a close friend of Loucks, was diagnosed with a rare degenerative neurological disease called Friedrich’s Ataxia. Baumstark said there are only four people in Sacramento diagnosed with this disease. The disease is genetic and causes damage to the nervous system. It is often diagnosed when the patient is within five to 15 years old, and most are wheelchair-bound shortly thereafter. Only 10,000 people in the United States have Friedrich’s Ataxia.

Baumstark recalls the day of his diagnosis and said he felt as if it was not immediately real. Once he went on the Internet to discover what he was really facing, he said it all set in.

“At that time you start to realize, ‘I’m faced with something that’s going to destroy my quality of life.’ Right then all my dreams ran through my mind: running around with my kids, being a person with the freedom of everything in me,” Baumstark said. “Those dreams come up and you realize the day will come (when) I can’t run or walk. I won’t be able to teach my kids to play baseball.”

Loucks and other members of de:terminence believe Baumstark’s bravery while facing that sort of inevitability is what encourages them to participate in activities that are challenging.

“Their motto is putting yourself to a cause bigger than yourself. Sean has been so inspirational. He said once he didn’t start living until he found out he was dying. He can look at life and laugh and have a positive outlook still,” Loucks said.

Loucks, along with other members of de:terminence, hope to raise money by running in the marathon. Loucks herself sets out to raise $1,000 for the cause.

Close friends of Baumstark remember feelings of disbelief and horror that the “life of the party” was going to be facing a battle for his life. Jason Harper, who received his degree in communication studies from Sac State, is one of Baumstark’s closest friends.

“Initially I was surprised. It was a disease I’d never heard of and sometimes the unknown causes the greatest measure of fear. We had to wrap our minds around the fact that this is a true statement,” Harper said.

After his diagnosis set in, Baumstark began to seek out other people with Friedrich’s Ataxia. He discovered stories of those with the disease and found his inspiration for what would become a life-changing experience.

“I started reading stories of people diagnosed with this who became depressed and lethargic. I thought that I have no control over how my story begins or ends, but I have control over everything that happens in between. If I’m one of these stories I want to make sure it’s telling people I did everything I could despite my disease,” Baumstark said.

Around this time Baumstark and two of his closest friends, Harper and Russell Breton, went on a hike at Flag Pole Peak. The three describe the event as life-changing. It was the challenge of the dangerous hike, and overcoming his fears to make it to the top that sparked the idea for an organization which would inspire many. Harper recalls the day as ground zero for the organization de:terminence.

“When we got to the final ledge, Sean wanted to go back. It’s this ridgeline that’s about 20 feet long and six inches wide. When we got there, Russell and I shimmied out. Sean was like, ‘Oh, I’ll just stay here’. We kind of jabbed at him and I said that he couldn’t get this close and finish ‘almost there.’ Literally shaking, he walked out to this flagpole. As we sat there next to it we all just kind of knew this was going to be huge,” Harper said.

Breton also remembers the moment where Baumstark stepped onto the ledge, and the feeling of hope that they experienced.

“It was all him up there. He had to make a choice. To stand where he was and accept the mentality of ‘I’m handicapped,’ or accept the risk and walk toward what symbolized hope. I saw him take a step, and that step broke him. When he reached that pole, I knew it was big. I felt so important to be on that mountain with Sean,” Breton said.

From there Baumstark and his friends brainstormed about how they could inspire people, who in other cases may not be able to conquer major hikes, marathons, triathlons, or anything else they aspired to.

The words “determination” and “resilience” were the most prominent in their minds, and from there the name was born. The organization was named “de:terminence” and its goals are to “de:rail, de:fy, de:story, de:fuse, and de:molish the physical and neurological diseases and disorders that keep people from living life to its greatest potential.”

De:terminence has since developed into an organization that aims to offer hope to those facing life-altering diseases. Harper said the organization is not only focused on Friedrich’s Ataxia, but also all diseases.

“We are all affected by people with rare and various diseases. Right in our own little world we have a lot of people dealing with a diagnosis, not the disease,” Harper said. “We want to tell people, ‘Hey, we have a place for you.’ We want to create a place to find hope, a place to find healing and wholeness. Not just if someone is diagnosed, even if it’s just a family member who has been.”

Baumstark says he now holds his disease with high respect, and attributes his outlook on life to it.

“I never would have run a marathon, or tried to climb a mountain. Everybody is faced with a challenge that is as big as Mt. Everest. For me, I never wanted to be the person who said, ‘That sucks. Now my life is over.’ That was never an option. I want to use my challenges to get people to move,” Baumstark said.

The members of de:terminence decided to participate in the California International Marathon, which takes place on Sunday. More than 50 people, including Loucks and other current and former Sac State students, have signed up to run the marathon and aim to raise money to benefit de:terminence and Friedrich’s Ataxia.

Sac State junior Katie Keeler, who is participating in the marathon, said she had attempted to train for a marathon prior to joining the de:terminence group, but had not succeeded.

“It’s been a million times easier training for Sean than doing it on my own. It’s hard to wake up at 5 a.m. on Saturday morning for four months straight for yourself. You have to a have a reason to wake up. It is easier when you have someone to look at and say, ‘If he can get up and run with us, there is no reason I can’t get out of bed,'” Keeler said.

Keeler said the number of people that turned out for the marathon training was an attribution to the effect Baumstark has had on the community.

“It kind of renews your faith in people to see them all out here at 5:30 in the morning, ready to run. (Sean) is an inspiration; it’s such a struggle for him sometimes and he still does it,” Keeler said.

Baumstark said the way he felt upon learning of the number of people committed to his cause is indescribable. He had not originally planned on running in the marathon, but upon discovering that more than 50 people signed up to participate, he changed his mind.

“It moved me in ways I have never been moved. I only knew 12 or 15 people personally, but the rest were committed to a cause that for me is life or death,” Baumstark said.

The amount of support is attributed by those involved to the power of community. Loucks said she believes that the reminder of what others are going through serves as motivation for many.

Loucks, along with other members of de:terminence hope to raise money by running in the marathon. Loucks herself set out to raise $1,000 dollars for the cause.

Baumstark’s long-term goals range from climbing all the major peaks in California, running a triathlon, and completing other extraordinary tasks.

“I hope to inspire people, especially children who are diagnosed,” Baumstark said. “I hope we can get everyone to a place where despite what they have, they can believe in themselves. We just want to raise awareness.”

The California International Marathon will take place on Sunday and Baumstark will complete 13.1 miles of it, which is considered a half-marathon. Many members of de:terminence have committed themselves to running the entire marathon.

“We will all face challenges,” Baumstark said. “What makes the best story is to be able to tell how you responded to your challenge. Some people will respond by giving up.”

Amanda Pollard can be reached [email protected]