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Interview With Youth Stem Cell Research Advocate Cody Unser

Cody Unser SOURCE: AP Photo / Craig Fritz Cody Unser, left, talks with disabled Army veteran Jim Hay poolside at the Rio Rancho Aquatic Center in Rio Rancho, N.M.. In addition to her studies at the George Washington University School of Public Health, Cody travels the country raising awareness for paralysis victims and promising science research that could one day cure them.

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Cody Unser is a normal 23-year old woman. A graduate of the University of Redlands in California, she now pursues her master’s in public health at the George Washington University School of Public Health. In her spare time she loves exploring marine ecosystems as a certified scuba diver. But there is more to Cody than meets the eye: paralyzed from the chest down by a rare auto-immune disorder at the age of 12, she now leads a double life as one of the most effective crusaders for stem cell research funding our nation has seen.

Cody hails from a family with a special status in American life:  Her father is two-time Indianapolis-500 winner Al Unser Jr. and her grandfather, Al Unser Sr., is also a repeat winner of the iconic American race, as is her uncle, Bobby Unser. The Unser’s are a veritable racing dynasty, with a total of 9 Indy-500 titles between them. Coming from a family that is considered American royalty by some has certainly helped Cody to tell convey her message. But Cody knows she cannot rely on her family’s notoriety alone.

“As an advocate, I’m trying to understand more about how to use my personal story and bring it together in a more powerful way,” she says. “I don’t want to just use my story, I want to back it with facts and the truth. And what these [embryonic stem cells] are and what the science is.”

With the help of the First Step Foundation, which she runs with the help of her family, Cody travels the country to raise awareness for spinal injuries, paralysis, and research funding for potentially life-changing therapies such as embryonic stem cells that could one day allow her to regain the use of her legs. She was even asked to testify before the Senate Appropriations Committee in September (you can watch the video here). Last Friday, Science Progress’s Jonathan Moreno had a chance to catch up with Cody to talk to her about biopolitics, her future, and educating congress and the public about the importance of science and technology in medicine and society.

“People who walk don’t necessarily think of their shoes as technology as much as I do my wheelchair. There’s a difference there that is interesting,” says Cody. “I rely on [technology] just to get around, from point A to point B. So I’ve learned so much about how technology influences science and health… there are two different avenues it seems… to think of the body not only as biology but also as engineering.”

Cody’s life is intrinsically connected to technology. “I think for a lot of people with paralysis or spinal cord injury, rehab and maintaining their body is a daily struggle—our bodies are deteriorating at a faster rate than most people.” Besides her wheelchair she uses a mechanical standing frame to help keep her bones strong, special scuba gear to allow her pursue her passion of diving, and special electrodes which stimulate her nervous system, allowing her to help maintain leg muscle by peddling on a special bike. From everyday use of technology that young people in her generation have become accustomed to—like Facebook—to the devices that she relies on to live a normal life and maintain her body, to her activism on behalf of millions whose futures literally depend on the rate of advancement of new technologies, Cody knows that she has a special relationship with science and technology.

“I think science gets at the core of our human vulnerability. Both in a negative and a positive [way]. Science has evolved so fast and it freaks people out because we don’t want to lose what makes us human. Science brings about cures in the medical world, stem cell research one day will be able to treat disease and disability. But I don’t think that we will ever lose what makes us human. Science will never be able to push us back that far.”

Science and health policy have a profound impact on Cody’s life, a fact which she thinks has shaped her decision to pursue a career educating Congress and the public about the importance of science and health policy. As an advocate for paralysis victims, Cody represents a population of as many as 6 million Americans living without the use of some part of their body. Of her testimony before the Senate Appropriations Committee on the promise of human embryonic stem cell research, Cody recalls:

“Basically you are the voice of a population whom science can influence and benefit. I was so humbled to be given the opportunity to speak on behalf of a huge community. I represent the spinal chord injury community, but I don’t know what it’s like to have diabetes, Parkinsons… [other diseases that could be cured by stem cell research]. To try to bring everyone together in the same world [to advocate for human embryonic stem cell research] was really cool. To be able to speak on behalf [of that] was something I’ll never forget.”

Ultimately, Cody is humble about the advantages she has had which enable her to pursue her passion for sound science-based healthcare and research policy, and as an advocate for spinal cord injury victims.

“I didn’t have to fight for my right to work or to enjoy my life like anybody else. To be able to now represent that population and not think about those things and move forward…I think the fight is out there. And the fight is different this time.”

Listening to Cody, it’s clear she’s more than up to the fight.

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