October 1, 2004

And Now A Message From Emmie, the RA Spokes-Beagle

This week has been a banner week for me -- several people have commented on reading "Life With RA" and this feedback makes me so excited and humbled. Every writer, I think, secretly wonders if their work is ever read. Hearing from friends, colleagues, fellow RA patients, family, friends of family… it has truly been a blessing and an honor to know you are all out there reading.

The number one thing people mention to me? Why, of course, it's Emmie the Beagle. I'm thinking she has become Emmie the RA Spokes-beagle. And with a face like hers, who can resist?

This week Emmie and I have a full plate. Well, she still falls asleep on her pillow by the sliding glass door of my office while I punch at the keyboard. The reason I've been so busy was due to the fact that this week I attended my first Arthritis Advocacy meeting.

Dictionary.com defined advocacy as: The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support. After attending this meeting, my belief is that "active support" is the most important component of advocacy.

Nick from the Arthritis Foundation got us together at the Columbus Metropolitan Library. From what I've been told, he recently earned a masters degree and he looked ever bit the part of a scholar: new squared glasses, camel-colored corduroy blazer and red tie. He knows a ton of facts about arthritis and rheumatic diseases, but more importantly, he was just itching to get in front of Congressmen and women and Senators to advocate on behalf of all the men, women and children in Central Ohio that have these conditions. The most important thing, right now, is that our lawmakers, Republican and Democratic alike, know about the first piece of legislation in 30-years geared toward those of us that suffer from arthritis or related diseases: Arthritis Prevention, Control and Cure Act of 2004.

I think it is important, during this election year, to point out that this legislation is bi-partisan.

Nick, who has the enthusiasm of a boy getting ready to trick-or-treat when it comes to advocacy of arthritis, suggested to me that I write about this issue here. Of course, he mentioned this to me after he mentioned that he had read all about Emmie the beagle.

So, I'm taking his advice. If you're concerned about RA, or other related diseases, if you have friends or family that have been affected, or if you want to make a difference in health policy, I urge you to become involved - become an advocate.

Okay, so what does that mean?

Remember that part of the definition of advocacy is "active support." An easy way to lend active support is to go to http://www.arthritis.org/ and along the top toolbar, click on the tab marked "Advocacy." This takes you to some interactive tools that allow you to write your legislators about the Arthritis Prevention, Control and Cure Act of 2004. It can create an email or letter for you that you can send to your representatives in the House and Senate.

I've sent emails from the site and am crafting a personal letter to my Congresswoman, who happens live in the same area I do. Who knows, maybe I'll take Emmie the Spokes-beagle on a walk past her house. Who couldn't be swayed by those big brown puppy eyes?

My friend Joanna got me involved with advocacy. She's the volunteer leader of the advocacy committee and also an RA patient like me. She is definitely not the kind of person who sits on her laurels when it comes to being involved with things that can positively affect RA, RA research and day-to-day issues that impact patients. In fact, this year, I believe, will be her tenth year of having a team for the Jingle Bell Run, an event that raises money each year for the Arthritis Foundation (more on this in upcoming musings). What Joanna helps me to do is focus on those things that are active, that can make a difference for us. Advocacy must come from those of us who struggle with the condition. Positive changes and awareness is effected by me, and her, and anyone else who stands up and tells their stories.

Another member of the committee that I must mention is Dr. Gloria Higgins, a pediatric rheumatologist at Children's Hospital. She told me something that was completely staggering -that there are over 500 cases of JRA and related rheumatic diseases in children in Central Ohio - more than juvenile diabetes or cystic fibrosis, which tend to get a lot more media coverage. Many more children never get diagnosed or don't see disease-specific health professionals. Dr. Higgins, a fellow West Virginian (Joanna says I can spot a fellow West Virginian anywhere), is a slight woman with a kind face and a passion for helping kids with rheumatic disease. What would bring Dr. Higgins great satisfaction would be a fellow in pediatric rheumatology at Children's. Because they are understaffed currently and because research is vital, this position could be a huge benefit. But like most other institutions, budgets are tight and internal politics are not in favor of a fellow being established. It also wouldn't make money for the hospital. With a stipend for the fellow and related costs, the position would require an investment of under $100,000.

I'll see if I can get Emmie the Spokes-beagle to add that to her busy agenda. Right now, she's sunning herself in a shaft of light fromthe sliding door, so it will have to be tabled until such time as delicious treats can be established.

I'll say one thing for our favorite hound; it's good to be a celebrity.

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Posted by: Vmwdnwzp at July 15, 2009 7:39 PM

Posted by: Vmwdnwzp at July 15, 2009 7:39 PM

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