A.S. Face 1000: Kelly Christal Johnston

Face 1000

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…


 Hurting But Hopeful

18 Responses to “A.S. Face 1000: Kelly Christal Johnston”

  1. Seems only fitting Kelly be face 1000! Welcome Kelly and I look forward to actually sitting down and reading this novel, soon! 🙂

  2. Dear Kelly,
    Thank you so much for sharing your story with us. Thank you for being my friend. Thank you for listening to all my tears during this project and saying Oh Cookie Monster you are so silly, you will get this done, I have faith in you. Thank you for everything.
    Sincerely Cookie Monster

  3. I am pleased you are Face 1000. Your love for Cookie and the SAA is shared by myself and so many.
    Your eloquent words about your/our journey are perfect.
    I agree, you found your purpose! Thank you!
    Face 377

  4. Dearest Kelly,

    I am honored to me you! I had absolutely not connected the dots about you. . Congratulations on your accomplishments!
    May I submit my resume to you, ASAP, SAA….?
    My bag is already packed!
    I’ve been following Cookie and Faces since 2001. Finally submitted my story to her less than a year ago.
    I have met Helgi Spencer Olafson & Jim Weatherhead in person in 2003.
    Interviewed with NARF for article published last week;http://www.curearthritis.org/candyces-fights-ra-as/
    Borrowed my landlord’s tablet & Internet for few hours today to stay live with Cookie & today’s celebration.
    When you get a chance, I look forward to hearing from you soon!

    Candyce Sindelir
    Faces #700

  5. Dear Kelly, thanks for sharing your story and your history with Cookie. It’s a blessing having you as an advocate. See you in the SAA Forums 🙂

  6. Kelly, I knew that face 1000 was going to be someone special and when I saw it was you, I was not surprised. Thank you Kelly and Cookie for all of your hard work and tenacity in spreading awareness of Ankylosing Spondylitis. Your story, like so many others mirrors my experiences in seeking an answer. When I did get my answer I went online in search of information and found ASAP. Through your network I have made friends that have ended much of the isolation that comes with this disease. Thank you Kelly!!!

  7. Welcome Kelly # 1000 glad to see you here only seems Like I become # 1 yesterday time goes so quick . I’m so pleased I met you and Cookie that night two years ago one of the best things to happen to me in all my years of having AS I’m proud to support anything either of you do. I’m sure the Monster has plans for me in the future xxxxxxxxx

  8. Absolutely perfect!!! You will both always hold a special place in my heart, and I am very proud of what you have accomplished.

  9. Well Done! As Sean said – Absolutley Perfect…Cheers to Cookie and all 1000 faces!

  10. Kelly, There couldn’t be a more fitting story for Face #1000 !! Thanks so much for your hard work (along with Cookie and the rest of the advocates. Without all of you we would never have been connected !!

  11. Thank you Cookie and Kelly, you two are a true inspiration to so many people. I am blessed to be part of your vision.

    Joe guzdial

  12. I am so proud of you Cookie, Kelly and every other face here. I’ve had a time these last few months sleeping. Between AS and not sleeping, I’m sure I am the only person who has actually reached both ends of the internet. This is always a wonderful place to land and feel like I am at home. There are others like me and they are all right here. Thanks for making the goal and making awareness happen.

  13. Thank you, thank you, thank you! Through the hard work and determination of you two ladies I have found a support network I never imagined existed. Many, many people owe you both a debt of gratitude.

  14. Great job, Kelly,
    I can honestly say that until you raised my personal awareness, I had never heard of AS. Because of your project, I’m sure that thousands have become aware through this forum. I am proud of your work!
    Love you,
    Aunt Kay

  15. Bravo! I admire your dedication to the cause.

  16. Hi Kelly, I just got off the phone with Cookie and I was inspired to read your “faces” again. Cookie inspires so much 🙂 Thank you again for sharing the story regarding Cookie days, ASAP, SAA and a bit about your personal journey. With deep gratitude, Rich

    • I just recently read all these comments. I am so humbled by your kind words. I love Cookie and I’m so proud of this amazing project that she has worked so hard on. I know she inspires me daily. Thanks again to each one of your comments. They all mean so much.

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