- Jenny LaBaw made a name for herself in CrossFit competitions
- She came forward in 2012 to reveal she has epilepsy
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(CNN)It was the 2011 Reebok CrossFit Games, and Jenny LaBaw was an underdog.
She had only started training for the competition seven months before. While CrossFit seemed extreme to some, the fitness regimen made sense to LaBaw, who had competed in sports through childhood and college and ran marathons as an adult.
Still, many were surprised -- including LaBaw -- when she placed sixth in the competition that year, making her the "sixth fittest person in the world." Her boyfriend, Marcus Brown, said that her involvement in CrossFit led to a "rebirth," reawakening the competitor within.
But she was hiding something: LaBaw had been diagnosed with epilepsy at the age of 8. She has a constant tingling in her right arm, referred to by some as "the shakes."
The stigma around the disease, which most people associate with seizures, made her afraid to come forward. In 2012, after her CrossFit success, she decided to make a video and tell the truth.
"I developed a platform as an athlete and had the courage and strength to stand up," she said, crediting Brown with encouraging her to do it.
"Before, I felt like her epilepsy was a weight, something that burdened her every day of her life, whether others knew it or not," Brown said. "It was a secret, an embarrassment, something that separated her from the rest of the world. After she shared it, things changed. People came out of the woodwork with stories and kind words of encouragement, words of praise for being strong enough to share something so personal."
No longer afraid to say who she is, LaBaw wanted desperately to help others stricken with the disease.
"Three months ago my boyfriend and I visited Colorado to visit my family," said LaBaw, now 33. "I had tears down my cheeks and told him I decided to run cross-country for epilepsy."
On September 19, she set out on a 500-mile run from the New Mexico border through the Colorado Rockies to the Wyoming border. She uses the hashtag #movemountains to update those following her journey.
Her goal is to raise $50,000, all of which will be donated to the Epilepsy Foundation of America. She's raised about $35,000 so far.
"It became apparent early on that this run was about much more than epilepsy. Each and every day I come across stories about the goodness of humankind and/or overcoming adversity," she said. "I'm very lucky that for two years I've had complete seizure control."
The end of her run is in sight: She expects to reach the Wyoming border by October 19.