Our family had the opportunity to visit Washington D.C. to meet with members of our Congress to share our JRA journey. For those of you that know me- it shouldn't surprise you to hear that the Sloan Family is raising our hands & voices against arthritis. It was amazing to be surrounded by 312 people representing 47 states , including 80 children who all believed the same thing! Arthritis is unacceptable!
Our first afternoon in D.C. consisted of our family participating in a home town radio interview. Bobby seldom has the chance to be with us and participate in arthritis events- so he shared how arthritis impacts his life and his family's life. We also attended a new advocate training session that covered information about political and legislative processes. Jake and Hannah attended kid's group where they learned about government and how to advocate for themselves. Lots of information to take back to the hotel room and prepare for our U.S. Senate appointments the next afternoon.
|The "Sloan Siblings" ready to share their story!|
Our second appointment was with Senator Marco Rubio with Sally Canfield, the legislative director. She was such a delightful lady! Jake and Hannah both talked with her as she asked them many questions about living with JRA. Jake told her that friends make fun of him for wearing his splints and that he hates having arthritis. We kindly asked for consideration of the following:
1) Join the Congressional arthritis caucus
2) Make arthritis a national priority and send President Obama a letter
3) Continue to fund arthritis research through the NIH
4) Put arthritis on the list of diseases researched through the Congressional directed medical research program.
Another busy day ahead for the Sloan Family on Capitol Hill. We had three appointments with House of Representatives, Rep. C.W. Young, Rep. Dennis Ross and Rep. Ted Deutch. Unfortunately, Jake woke up today not feeling well. It was a long busy day of walking the halls on capitol Hill, but we continued to do so and had another day of successful meetings. Jake and Hannah did amazing, too! I was so proud of Jake for speaking out and telling Congress exactly how he feels. At one meeting- someone said, "it must be hard to have days when you don't feel well'. Jake replied, "I don't remember when I had a good day".
|The Sloan Family with Rep. Dennis Ross.|
We get back on the plane and have a few quite moments to reflect our trip to Washington D.C. I would do it again and again and again! Our government officials that we elect are going to continue to hear from The Sloan Family. My children are counting on me to be their voice and attempt to find better medications and most of all to continue research to find a cure. Thank you Arthritis Foundation for trusting our family to be the voices from Florida and the 50 million Americans who suffer from Arthritis everyday of their lives!
I encourage you to become an Advocate, if you are not already an advocate through the Arthritis Foundation. Wouldn't it be nice to be able to take a pill form of a biologic drug? We need our government to continue to fund research through NIH and help us get a few steps closer to this new biologic pill, rather than infusions and shots. I need to know is there really a genetic link with arthritis? Most importantly, how can we prevent Jake and Hannah's children from also having JRA? Why do 12 of our states not have any pediatric rheumatologists to treat children with JRA? Arthritis is unacceptable to me and we need the government to make arthritis a national priority, too!
|President Jake Sloan|
|Future First lady..Maybe??|