May 5th marked the celebration of World Ankylosing Spondylitis Day but we’re thrilled to see Ankylosing Spondylitis Health Activists raising awareness all month (and year!) long. Meet Jenna Visscher, creator of Walk Your A.S. Off, a walking event that brings together Health Activists all over the globe to join in tracking steps to circle the globe! Here’s what Jenna had to share about Walk Your A.S. Off, being an Ankylosing Spondylitis Health Activist, and the many ways you can get involved!
How did the idea for Walk Your A.S. Off come to be?
I saw this video http://www.youtube.com/watch?v=aUaInS6HIGo that shows how much our chances of many health conditions are greatly reduced if we simply walked for 30 minutes a day. It’s a very powerful video. Then I started speaking with the Arthritis Foundation’s Rocky Mountain Office about being a part of their speaker’s bureau.
For the first time in over 9 years of having lived with ankylosing spondylitis I really heard the message that we have to move. It is a difficult concept to embrace since moving very often equals pain for someone living with chronic illness and pain. I then realized that if after all this time I hadn’t heard the message then perhaps others hadn’t either.
So I started thinking about how to get not only myself to start moving more but people in my community too. That is when the catchy phrase came to mind. It’s catchy and kitschy and I thought with a cute logo we could have some fun and do some good for ourselves and maybe raise some awareness at the same time. Walk Your A.S. Off was then born! I decided to keep it simple and just create the project via Facebook & Twitter with some more information available on my blog. No registration or fundraising – no reason NOT to do it.
The original goal was one million steps! I realized only a week in with almost 30 teams coming on board that we would have to rethink the goal. That is when two advocates of the AS community both came up with circling the globe! Michael Smith & Cookie Hopper both are credited for that great idea and we all set about making it happen. And we did it – we circled the globe in steps made in the name of ankylosing spondylitis!
What are you most excited about in the online health community or Health Activism?
I’m excited to see the new frontier of health advocacy becoming a more main stream concept. It’s still a bit of the Wild West out here in our communities but I think with the help of organizations like WEGO Health supporting our efforts, corporate America and big pharma are really seeing the power of the patient advocate. Successful grassroots efforts and initiatives are huge in our ability to show we are serious and professional in what we are doing and most certainly we are not to be underestimated!
How can other Health Activists help raise awareness about Ankylosing Spondylitis?
Raising awareness is difficult to define. Some see it as a very local, making sure your family and friends know what the disease is that you live with. Others work to do wonderful disease specific support projects and work for and within the community. I tend to think that to really be successful in raising the knowledge about what AS is and frankly that it even exists, that we have to do projects and initiatives that are of interest outside of our communities and the people who know about AS intimately.
We can talk to ourselves until we’re blue in the face about the need for “the world” to understand what a life with AS entails but we’re speaking to the choir. Find something you love to do and then tie it in with advocating for better knowledge and research for a cure for ankylosing spondylitis or whatever disease you specifically wish to advocate for. Once you do that, people will listen. They will be curious and your heart will be in it.
If you just talk about how horrible the disease is people tune out, it’s unfortunate but it is what it is. Add YOU to the mix and have the advocacy be only part of who and what you do. When your heart is truly in what you do people take notice, they are curious, and they will want to hear about your passion and as a byproduct of that, they will learn about the message behind your reason for sharing.
Step outside the “advocate mold” and do something unique.
Thanks to Jenna for sharing her work with us and congrats on Walk Your AS Off! We look forward to featuring more awesome advocacy projects like this one when we focus on “Health Activism IRL (In Real Life” – in July!