Saturday, June 24, 2006
My story is long but here is my brief version:
Before I found the Arthritis Foundation I thought I would have to continue to battle this disease on my own and would forever be alone in my pain and existence. That all changed the day I found the arthritis foundation and it was through my Rheumatologist who sent me to be a Arthritis Self Help instructor as I had communicated to him I wanted to do more to help those with arthritis. Being in a room full of people whom I shared one thing in common gave me great hope and desire to help. Then came the Arthritis Walk and another opportunity to bond and make a difference for those with arthritis. Another area I am passionate about and have gained the opportunity because of the foundation is advocacy. I have been to our nation's capital twice and had a direct impact for getting both Senators Bayh and Lugar to Co-Sponsor the Arthritis Prevention Control and Cure Act. And now I am Chairing the Walk and leading the way for those with arthritis. The arthritis foundation not only provides programs, services and research dollars but they also give people like me an opportunity to take a stand for arthritis.
What's your story? Has there been one significant event that turned your life around due to the Arthritis Foundation? Or there have been many?
So please take a few minutes and share your stories no matter how small you make think they are please use this as an opportunity to give if you have been wanting to but unable because of your current health.
Thank you and please know that I truly love and admire each and every one of you. Your courage and strength are an inspiration to me and I can promise you I will continue on this crusade until my death takes me from this earth.
I anxiously await your stories.
Love and God Bless,
Tuesday, March 21, 2006
This year's summit had many new and some familiar faces, 271 in all representing 44 states to build on the accomplishments from last year's summit. During the 2005 summit 31 Senate and 119 House were secured to cosponsor the Arthritis Prevention, Control, and Cure Act. https://www.arthritis.org/advocacy/priorities/priorities_2005apcca.asp This year we were given the task of obtaining an additional 15 Senate and 69 House cosponsors. We obtained 4 Senate and 19 House but still need your help in Indiana. Senator Evan Bayh signed on to cosponsor in 2005. After two visits Senator Richard Lugar has not chosen to cosponsor yet. Out of 7 districts in Indiana we have two cosponsors from the House, Congresswoman Julia Carson and Congressman Mark Souder. Please write your representatives and share your personal story of how arthritis needs their attention and ask them to cosponsor the APCC Act. http://capwiz.com/arthritis/issues/?style=D&
My arrival to the registration desk turned out to be an exciting one. I was not the only representative from Indiana to speak on behalf of the 1.7 million Hoosiers with arthritis. Marva Stanford from the National Arthritis office who lives in Indiana, the Bonham family with their daughter Lyris (Indiana walk honoree), the Bickel family with their daughter Suzie (Indiana walk honoree) and Dr Kara Schmidt, Fellow for Pediatric Rheumatolgy at Riley Children's hospital were all here to put a face to arthritis and create change.
While our Indiana representation had increased over the 2005 visit we can still do better. Out of 7 districts we had three represented. In lay mans terms that means we had three face to face scheduled meetings with our House of Representatives out of a possible 7. In those three meetings we had one success with Congresswoman Julia Carson agreeing to cosponsor the Arthritis Prevention Control and Cure Act.
In general our requests were the same from 2005.
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.
Support additional funding for arthritis research at the National Institutes for Health (NIH).
Support increased funding for the Centers for Disease Control (CDC) arthritis program.
Thank you all for you support and part in this historical time in those lives effected by arthritis.
If you would like to get even more involved please contact me. I am this year's Arthritis Walk Event Chair and am a team captain again this year and am looking to increase my team size and awareness in Indiana with your help.
Sunday, March 19, 2006
Sunday, February 26, 2006
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!
I am returning to D.C. again to be a part of change for those with arthritis by asking our congressman and senators to co-sponsor the Arthritis Prevention Control and Cure Act. I encourage you to share you personal stories with your state representatives. It is made easy by the arthritis foundation through their web site at www.arthritis.org. Just look for the advocacy link on the site.