My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Thursday, March 31, 2011

The Sloan Siblings and family visit capitol Hill to share our JRA Journey.

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!
Bright and early we begin our second day with Chrsitophrer Kush of Soapbox Consulting, leading an interactive training session to help us conduct successful meetings with our Senators, Representatives and their staff.  Within a few hours, we were ready to take the metro (subway) to Capitol Hill to share our story.  Our first appointment was with Senator Bill Nelson with his legislative correspondent, Gene Schlesinger.  It was great to have the opportunity to share our story and to tell them publicly what we need!  I wasn't able to hold back the tears. It was a lot harder to share our story than I thought it would be! Gene listened closely as our family expressed concerns about pain, disability and cost of arthritis is unacceptable!I shared our personal story as I have had JRA since 3 years old and then to raise both of our children with JRA is beyond difficult.  Bobby was there by my side when I couldn't choke out any more words- he moved on the business side of the meeting asking for just a few simple things from our government. Overall it went well and I am confident that Gene learned something about JRA today.

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??


  1. It's odd how difficult telling your story can be, isn't it? I had thought it would be so easy; I had it all planned out. It's hard to express exactly what we go through. There's so much! I'm so thrilled that you were able to go. You are so much more articulate than me in person. And your children capture everyone's hearts :)

  2. Thank you for going and being our voice, love you!

  3. Thank you, Danielle! Wasn't planning on it being so emotional! We live it everyday- and nobody wants to hear about it, so when I had a chance to share my was heartbreaking!!

  4. I have to update you-- Rep. Dennis Ross joined the Congressional Arthritis Caucus!! I am so pleased and truly appreciate the support! I encourage everyone to become an arthritis advocate!! Your voices need to be heard, too!!