Athletes Joined Against SpondylitisAthletes Joined Against Spondylitis
Athletes Joined Against Spondylitis (AJAS) is a 501c3 nonprofit organization formed to raise awareness of a rare form of arthritis called ankylosing spondylitis (AS). Through AJAS and the activities of our paintball team, Team FUSE, we raise awarenes... Read more
Athletes Joined Against Spondylitis (AJAS) is a 501c3 nonprofit organization formed to raise awareness of a rare form of arthritis called ankylosing spondylitis (AS). Through AJAS and the activities of our paintball team, Team FUSE, we raise awareness of this crippling disease, provide a role model for kids with disabilities through the personal example of Team FUSE captain Brian Warner -- who himself has AS and waited 10 years to get the right diagnosis -- and raise funds for AS research and treatment.
The founders of AJAS set four goals for themselves:
Raise awareness among the medical community and potential patients. We are currently achieving this goal by attending PSP paintball tournaments where we are fielding at least two paintball teams and also sponsoring an awareness booth in the trade show area. Hundreds of thousands of participants and spectators come to these tournaments each year. Not only are paintball players directly in the demographic for ankylosing spondylitis, but many of the players and their family members are in the medical community. We are proud to say that despite the tough economy, in 2011 we attended every tournament with both the teams and the booth for the first time! We have also established a relationship with the local Arthritis Foundation chapter and have participated in several of their events and conferences.
Create a platform for ankylosing spondylitis patients. Through our website, www.joinedagainst.org, we have given AS patients an ear and a voice to express their fears and talk to others who actually have the disease. This goal is still in its infancy but we are making strides. Also, many young men find out they have AS while serving our country in the military. Therefore many AS patients are treated at the nation’s VA medical centers. One of the largest patient "pools" is actually right here in Cincinnati because we have one of the best VA hospitals with one of the best research facilities nearby, University Hospital of the UC Health system. We have made contact with Dr. Jerome Herman, who takes care of this patient base, about working with him in the future.
Use some of our proceeds to fund research, such as through the Spondylitis Association of America. SAA's mission is to help find a cure for AS and to empower people with AS. AJAS embraces that mission and intends to extend it by providing financial assistance and providing a very-real platform for publicizing their efforts, through Team FUSE and competitive paintball. We also hope to be able to sponsor Dr. Herman’s activities, mentioned above. As we are still not breaking even in supporting our own activities yet, this goal is still in the future.
Establish a resource for the un- and underinsured to help give them access to medication. This is a long-term goal. Working with the pharmaceutical companies, some of whom already offer financial assistance to their patients, we hope to help provide some form of centralized assistance to AS patients. Because the disease is so debilitating, many patients find it difficult to have the energy to seek assistance while trying to pay for medication. And because the disease often means loss of employment, AS patients often lose their insurance that might have covered the very medication that might have saved their jobs. We have not even begun this yet, but it is on our radar.
About Ankylosing Spondylitis
AS is a systemic autoimmune disease and a type of arthritis that affects the joints between the vertebrae of the spine, especially those found in the lower back. AS causes inflammation in the areas where tendons or ligaments attach to bone, which then makes the vertebrae merge -- or fuse -- together. Gradually, the disease moves up, affecting joints higher and higher on the spine. Besides the joints, the lungs, heart and eyes can also be affected.
More than one million people have AS. Two-thirds of all patients, such as the entertainer Ed Sullivan, end up with a curved, forward-stooping posture. Most end up unable to work, to drive or to enjoy a full life with their families. AS most commonly strikes males between 15 and 35 (but females can also get it); about 5 percent of all cases diagnosed are in children.
It is estimated that more than half of AS patients took more than five years to be diagnosed; almost a third took 10 years or more. Respondents to a 2002 study conducted by Harris Interactive (on behalf of the Spondylitis Association of America) presented a grim view of life with AS:
66% had forward-stooped posture.
55% said their spine had at least partial fusion.
60% had limitations to their daily lives.
25% were forced to change their job/career because of AS.
44% avoid certain jobs/careers due to AS, while 17% under age 65 said they are "not working."
24% saw five or more health professionals before final diagnosis.
29% said that when pain was at its worst, they were unable to move and were incapacitated.
51% had trouble breathing because of the disease.
There is no cure, only treatment for the symptoms, and many insurance companies do not cover the medications. AS is not well known in the medical community and is often misdiagnosed. In Brian’s case, by the time he was finally diagnosed he had an advanced case of AS. With the help of a paintball teammate (David Wohlfeil) and another friend (Wendy Beckman), Brian founded AJAS to save others from what he had gone through so that their condition might be diagnosed earlier.
On Oct. 10, 2011, we celebrated our fourth anniversary. Won’t you be part of our fifth?
Athletes Joined Against Spondylitis: Raising Awareness and Standing Tall