UC Colleagues use innovative non-profit to raise awareness about rare spinal disease

Three colleagues at the University of Cincinnati have joined together, taking a unique approach to raising awareness about a rare disease at national paintball competitions.

Brian Warner and Wendy Beckman, who work in the UC Communications Division, and then-UC student David Wohlfeil launched the non-profit Athletes Joined Against Spondylitis. Ankylosing spondylitis is an autoimmune disease, and rare form of arthritis that causes the vertebrae to fuse together.

Around one million have the disease, which mostly affects men in their 20s, including Warner, who endured a battery of tests over 10 years before being correctly diagnosed. He suffered from chronic back pain for years, at times unable to walk or stand. He manages the disease now, but it has no cure and eventually could leave him unable to walk or work. Warner works in UC College of Nursing's Web department.

"He wanted to do something to help people so they wouldn't have to go through so many years without recognition of what they were suffering from," said Beckman, who is the non-profit's communication director.

The non-profit launched in 2007. Its aim is to raise awareness and funds for those who don't have insurance that helps pay the $30,000 annual cost of treatment. 

That's why members, led by Warner - who was a nationally and internationally competitive paintball player - travel to several national paintball championships to reach young men who may be suffering from the disease and not know it.

In the last year, the non-profit has been less active as the paintball industry has taken a hit in the economic downtown. But the organization is hoping to become more active starting this year. They're taking a new avenue to raise awareness, by possibly working with a VA doctor to see how AJAS can reach out to the many AS patients at the hospital.

"Since a lot of insurance doesn't cover treatment, a lot of males are treated through the VA Hospital. And Cincinnati has one of the largest pools of veterans in the country," Beckman said.

Find out more about the disease or donate to the cause, here.

Writer: Feoshia Henderson
Source: Wendy Beckman, co-founder Athletes Joined Against Spondylitis

Enjoy this story? Sign up for free solutions-based reporting in your inbox each week.