A patient goes to Washington…

A few years ago, I learned about the American College of Rheumatology (ACR) event called “Advocates for Arthritis”.   The ACR ask people from all over the US who live with arthritis to apply to attend the event held in Washington DC.  It is an “annual event that brings together rheumatology professionals and patients to advocate on behalf of the rheumatology community.” (- See more at: http://www.rheumatology.org/Advocacy/Advocates-for-Arthritis#sthash.GUjKOaFl.dpuf).  We attend trainings on issues affecting doctors and patients within the rheumatology community then meet with our representatives in both congress and the senate to let our voices be heard.

capitol hill
ACR #AdvocatesforArthritis 2013

I was honored to be a part of this event in 2013.  I had told my best friend’s son about it.  He was diagnosed with ankylosing spondylitis a few years ago and is interested in becoming a rheumatologist.  He told me he was interested in attending some time, so this year, we applied and were both accepted. I will represent the state of Pennsylvania and he will represent New Jersey.  I’m so excited to have him learn about advocacy and to share this experience with him!

I will keep the blog updated daily.  Wish me luck!  #AdvocatesforArthritis

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

5 thoughts on “A patient goes to Washington…

  1. When is a good time to watch for applications for next year? I love doing this kind of thing. Though I no longer do it professionally, it would be serious fun to dip my toes back in that water.


    1. Hi Rick! The application comes out in June. I wasn’t going to go again, but my BFF’s son was interested and I really wanted to share the experience with him. I kind of forgot to post about it this year. I will remember to do so in the future….but June is when the application comes out. Make sure to follow @ACRheum on twitter. Wish me luck! It’s a lot of walking!!


  2. Hi Kelly,
    Thank you for helping raise awareness for Advocates for Arthritis. The ACR is excited and honored to have you and other patients with rheumatic diseases on Capitol Hill during the next couple of days.

    Bonny Senkbeil
    (Director of PR, America College of Rheumatology)


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