A.S. Face 1000: Kelly Christal Johnston
1,000 Faces in 1,000 Words or Less
When I first met Cookie, I thought she was really weird. She “spoke” (everything was typed in online forums to start) differently than any other person I had ever met before. She would say things like, “<giggles> comes over and pulls up a chair, how are you today Kelly?” Her uniqueness was a breath of fresh air. So I’m hoping you will pull up a chair of your own, grab a cup of coffee, and settle in for a story about the infamous Cookie Monster (who is probably pretty mad about now, since she said this story was supposed to be about me, but I would much rather talk about her!)
Before Cookie arrived, the Spondylitis community was missing a LOT. It consisted of the SAA forum boards and that was pretty much it. There was a core group of us, and we talked, debated, researched, mused, laughed, fought…..but we had nowhere else to go, and we were constantly worried that the world did not know or care about AS. I knew that if AS awareness hadn’t kick started by then, that it wasn’t going to launch itself…so we started scheming (all innocently of course.) We decided that awareness had to be raised for AS and its related diseases, and that the job to raise it was most likely going to fall in the patients hands…meaning ours. Which of course meant Cookie and I had to volunteer for the job!
Soon after our plotting began, we both moved over to Facebook, and invited our friends…I did my best to connect every AS patient that created a Facebook account, until I had a network of about 50 AS patients. By this point I realized the public did need to know about Spondylitis, and I had an idea of how to teach them. With the help of my “network” of AS patients/friends, I launched ASAP. Ankylosing Spondylitis Awareness Project was launched in December 2009, after I tossed the idea around within my core group of friends. It was decided that we needed to educate the general public (and some not so general, like drs, and patients, but I digress), that we needed to reach out to fellow Spondylitis patients and their families for support and to educate them and to help those misdiagnosed/undiagnosed, and that we needed to support as many Non-Profit Organizations dedicated to AS/Spondylitis/Arthritis that we could find, starting with the SAA. ASAP took off like a rocket, and has been doing great ever since. We have over 7000 fans, and we have successfully partnered with many non-profits like Wego Health, the SAA, Faces of AS, the AF, and others. ASAP is completely 100% run by AS patients…and one of the best decisions we made was the one to bring Cookie on as Admin.
Cookie was always involved in ASAP, as far as being a sounding board, and major support system for me, but she didn’t become directly involved until she created the Faces project two years ago. I knew she would reach her goal, but I also knew she needed a platform for posting her faces. What better place to showcase Faces of AS than ASAP? The rest is as they say…history?? Cookie did exactly what she said she would do even though she dealt with personal illness, tragedy, stress and she did it all while working her “real job”. I wasn’t discouraged when I heard her goal of 1000 faces….nor was I worried when any of the other obstacles got in her way…I just thought to myself, “you better get out of her way, she’s coming through, whether you like it or not!”
The rest is pretty much history. Cookie has accomplished so much, she has brought together so many people, taught so many about AS, supported an entire community. One woman, who considers herself bent and broken, yet she is able to mend families, rebuild bridges between friends, and move mountains when it comes to getting things done for others. If someone needs her, she is there. “Consider it done,” she will say. I’m not sure what is in store in the future for Cookie, but I know whatever it is, it will be amazing. ASAP is a better place because of her, the SAA is a better place because of her, and the AS community is a better place because of her. Cookie has helped move the Spondylitis community into this generation, and out of the Stone Age. She has given hope to a community that was once hopeless, and joy to many who are joyless. Cookie is a breath of fresh air, and I am proud to call her my friend. She is perhaps the best thing to happen to this community, and on behalf of the entire Spondylitis community, on behalf of ASAP, I would like to say, thank you Cookie Monster, for everything you have done for us. We love you, and we THANK YOU! CONGRATS!!!
Now for the true reason of this project…