Sunday, February 26, 2006

Washington D.C. 2005

We came together in our nations capital 260 strong including 30 children with JA as one voice for arthritis. Our purpose was clear our message had to be refined to make the most of our 15 minutes with our Congressmen and Senators. We received clear directions from our national office of public policy and advocacy, STAY TO MESSAGE!

I am happy to report Senator Evan Bayh agreed to cosponsor the Arthritis Prevention, Control, & Cure Act of 2005. There were many victories like this during the three day Arthritis Advocacy Summit in Washington D.C. where 42 of the 50 States were represented.

Dr. John H. Klippel, President and CEO, of the Arthritis Foundation said to me “there was a Jazz in the air he had not seen since the first Summit in 1999….” People were “Jazzed” or “Geeked” depending on which part of the country you are from about this years summit.

Our message included three very important objectives to achieve during our two days on Capital Hill.

Ask our Congressman and Senators to:

1. Cosponsor the Arthritis Prevention, Control, & Cure Act of 2005.

In brief, this legislation would:
* Improve coordination among federal agencies and the public with regard to the federal investment in arthritis research and public health activities.
* Accelerate research that will lead to improved treatments for juvenile arthritis.
* Invest in a nationwide public health campaign designed to reduce the pain and disability of arthritis through early diagnosis and effective treatment of the disease.
* Ensure kids with arthritis have access to specialty care by addressing the nationwide shortage of pediatric rheumatologists.

2. Support additional funding for arthritis research at the National Institutes for Health (NIH).
3. Support increased funding for the Centers for Disease Control (CDC) arthritis program.

Therefore, with these objectives in mind how would I sum up 36 years of living with juvenile rheumatoid arthritis in 15 minutes. This was no easy task ahead of me. Do I talk about being woke up in the middle of the night from my own screams from severe pain? Crawling to the breakfast table in the mornings? What about when I failed fourth grade because my teacher thought I was old enough to take on the responsibility of taking my medicines when I needed them (4 aspirin every 4 hours)? Or the effects of living with a disease when there was no direct treatment to stop the progression and destruction from the JRA itself? I had a plenty of stories but which one would be the SLAM DUNK?

I decided to be a voice for our children today. After all, they don’t know what’s ahead of them. My message was clear. Stay the course with inadequate funding and do not pass the Arthritis Prevention, Control, & Cure Act and our children will end up like me.

· Fighting discrimination from employers because they don’t understand just getting out of bed is a good day
· Having to chose over activities you love and enjoy because you cannot afford the consequences or simply can no longer do it
· Spend your adult life having surgery after surgery to replace joints destroyed by the disease
· Continue to replace the replaced joints because they are not a true replacement in the sense of the word replacement but only temporary to allow you to be pain free until they fail (either mechanically or because the body is attacking this foreign object) and need replaced.

What is my message to you after all of this?

Simple, make a difference and keep the momentum going that was started on February 28 and March 1 and select the link below and send the pre written letter to your state representatives.

Just type in your zip code and follow the links.

Together, we can make a difference and be ONE VOICE IN WASHINGTON!

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