Why We Advocate

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Today is the big day.

We are off to Washington D.C.  We are leaving a few days early so that we can drive from our home in the Midwest to our nation’s capital. Yes- this will be a “fun” trip, we will stop and see a friend (or two) along the way, and try to take in a sight or two. We will catch up with old friends at the Summit, and my boys will have another chance to meet up with kids who are just like them, but that is not why we are going.

We go to advocate, and this is why:

“Pediatric rheumatic diseases, often broadly categorized as juvenile arthritis, are a family of autoimmune diseases characterized by severe inflammation and pain that can occur in any part of the body. These diseases can be extremely debilitating and in some cases fatal.

A 2007 CDC study estimates that 294,000 U.S. children (1 in 250) have been diagnosed with arthritis or another rheumatologic condition. These findings establish that pediatric rheumatic diseases are more prevalent than many other chronic childhood diseases. In fact, rheumatic diseases affect more children than juvenile diabetes, cystic fibrosis, and muscular dystrophy combined.

Despite this statistic, pediatric rheumatic diseases receive far less research funding, both at the federal level and through private philanthropy, than many other diseases with far less prevalence. Best estimates place the annual total of private funding in the U.S. at around $2 million. The following table puts that figure into perspective, comparing the annual private funding of several common pediatric diseases.

Disease Prevalence——- ——————Private Funding (Annual)
Leukemia 1 in 25,000———————- -$270m
Juvenile Diabetes 1 in 500—————— $198m
Muscular Dystrophy 1 in 10,000 ———–$157m
Cystic Fibrosis 1 in 2,500——————— $126m
Pediatric Rheumatic Diseases 1 in 250 ——$2m”

* courtesy of the Juvenile Arthritis Association

Staggering, isn’t it?  To make matters even worse, there are less than 300 board certified pediatric rheumatologists to treat these children.

JA "superheros" made from the pictures of children with arthritis who attended the 2013 Juvenile Arthritis Conference

JA “superheros” made from the pictures of children with arthritis who attended the 2013 Juvenile Arthritis Conference

This is why we advocate.

We will meet with other advocates from across the country, and convene on Capital Hill. We will tell our congressmen what we are advocating for, and why it is so important. These are our three initiatives this year:

1) To make medications more affordable- biologics to treat forms of autoimmune arthritis (like JA) can cost patients THOUSANDS of dollars in out of pocket expenses, every single month.

2)To support arthritis research- We need a cure!

3) To increase the number of pediatric rheumatologists- because 300 doctors for 300,000 children is not enough.

This is why we advocate. This is why we travel to Washington D.C.

You can help too. Become an E-Advocate or an Arthritis Ambassador, and let YOUR congressman know (from the comfort of your own home) that these issues are important to you as well. Attend the virtual summit to learn more, and don’t forget to check back here for updates live from the 2014 Advocacy Summit!

 

 

 


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Comments:

  1. When you have a child with special needs, you HAVE to advocate. Go get em!!! And thanks for the info on how to e-advocate!
    Mindie recently posted…Chewy Spice Hermit BarsMy Profile

  2. I think it’s such an amazing thing that your boys have the chance to be involved in the political process in this way and I hope that the summit is especially successful this year!
    Elizabeth recently posted…Top Ten Reasons You Should Shop In Thrift StoresMy Profile

  3. I love that you are so passionate about JA advocacy and can’t wait to hear back from the summit. It’s incredible that you’re getting your entire family involved :)

    Best of luck and do give us an update when you return!
    Charlotte recently posted…Living with the one you loveMy Profile

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