The Walk Your AS Off Awareness Campaign attempts to raise the global community’s knowledge and understanding of Ankylosing Spondylitis. This is a disease that affects so many people, yet so few know about.
Ankylosing Spondylitis (AS), or spondyloarthritis, affects approximately 33 million people worldwide.
A.S. is an autoimmune disease that most commonly attacks the spine, although many organs may be involved. A.S. strikes young people in the prime of their lives (average age of onset 15-45) and diagnosis is often delayed up to 10 years during which time spinal fusion is occurring which is NOT reversible.
Without a diagnosis and treatment, A.S. can lead to full fusion of a person’s spine causing permanent disability – currently there is NO cure for A.S. Spondylitis is the most overlooked cause of persistent back pain in young adults. With our walk and our partner charities, we are working to change this by sharing the disease in our worldwide campaign.
In 2014, Walk Your A.S. Off™ received the endorsement of the Ankylosing Spondylitis International Federation for all people living with a form of Spondylitis!
This campaign is not about raising money – although we have charities we partner with and support for those who wish to fundraise. Money raised by walkers goes directly to these charities, Walk Your A.S. Off collects none of the funds raised.
Exercise is an integral part of any spondylitis program. Exercise is such a high priority that the Spondylitis Association of America states that “you must make time for it each day (even 5-10 minutes during a work break is helpful). If you do, many benefits will follow from your efforts. A spondylitis exercise program will help you maintain good posture, flexibility and eventually help to lessen pain.”
Walk Your A.S. Off™ was created as a form of active activism. And using the activities and exercises that benefit those with spondylitis, we can help to raise awareness of A.S. Those participating, who walk/run/bike/swim to support us, share and educate others about why they are counting their steps.
Our primary goals & mission
- First and foremost we want to help people with A.S. lead healthier and less painful lives. We wish for a higher quality of living, and we believe that walking has enormous benefits, not only for keeping our joints healthy and bodies strong, but walking also helps with our emotional wellbeing.
- We want to create a worldwide community of people with Spondylitis who work collectively to reach large goals – sharing that we should be hopeful that one day we can find a cure. We speak of dreaming big and reaching far off step goals. By setting very large goals and achieving them, this helps us believe that one day we can reach the goal of a cure.
- The average time for a person with Spondylitis to receive a diagnosis is 10 years and we hope to contribute to the global effort of our partnered charities to drastically raise the awareness of A.S. in the general population to help people understand that spondylitis is the leading cause of persistent lower back pain in young adults and shorten the diagnosis time. Our Walk is reaching more and more people who are outside of our disease community – where awareness efforts need to be focused. As the patients & friends and families we are taking matters into our own hands and looking to cut down the number of years to diagnosis that for many has disastrous results in irreversible spinal fusion.
- We wish to support the organizations that support us; which is why we have added the fundraising component to our walk. We provide the tools and direction to our participants to fundraise for many of the non-profit organizations which support research and awareness efforts globally such as: SAA, NASS, ANRF, etc.
What makes our walk different?
- We don’t base our initiative on a one day walk that many organizations use for fundraising.
- We base our initiative on getting people doing what is good for their health.
- We walk long enough to form the moving/walking habit which is what we need most!
- We encourage people to start slowly.
- We want them to move, but we want them to move at a pace which is beneficial to them.
- We also want them to be aware that if they are physically able to only walk a few steps, every step contributed helps us reach our collective goal and with their doctors permission will also help them.
- We encourage the use of a pedometer, and have found that once a person sees the level of activity they are already achieving, they are encouraged to add a bit more day to day. This has in turn led many to see that the increased strength helps them manage their disease.
What we’ve already accomplished
In year one (2012), we wanted to walk 1 million steps! We quickly realized that with the outpouring of support we received, we needed a much larger goal so our 20 initial teams set out to circle the globe in steps made in the name of Ankylosing Spondylitis – and we did it! We collectively stepped 63,978,087 steps or about 32,000 miles!
In year two (2013) we grew enormously and took on the seemingly impossible goal of “WALKING to the Moon” – a goal TEN times the size of the goal from the year before – and we DID IT! We collectively took 654,568,770 steps well over the approximate 478 million we needed or about 328,000 miles!
Where we’re headed
In year three (2014) we’ve taken on a goal that may take us approximately 10 years to accomplish – 10 years – the average number of years it currently takes a person with A.S. to receive a diagnosis. We are attempting to be the first people to “step foot” on Mars! We realize this is a far reaching vision, but one that can fulfill many of our goals and reach a world full of people – affecting people with and without AS positively in so many ways!
How we began
Walk Your A.S. Off™ was conceived and founded in 2012 by Jennifer Visscher, an A.S. Health Advocate and blogger. Read more about why we walk here.
To find out more about ways to work with Walk Your A.S. Off™ please email the director and founder: Jennifer Visscher at walkyourASoff@gmail.com