Arthritis Advocates Visit Washington


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Champions of Yes: Becca, Caroline and Abby

On March 14-15, my daughter and I, along with nearly 400 people from 46 states and the District of Columbia, gathered in Washington, D.C. for the 18th annual Advocacy Summit sponsored by the Arthritis Foundation. Leading the fight for the arthritis community, the Foundation helps conquer everyday battles through life-changing information and resources, access to optimal care, and advancements in science and community connections.

“Arthritis takes a devastating toll,” says Sandie Preiss, vice president of Advocacy & Access for the Arthritis Foundation.  “The Arthritis Foundation is committed to educating our lawmakers on the significant impact of arthritis on our nation’s health and economy.  Together with our Advocates, we can tell Congress that they must improve access to care for the millions of adults and children living with this disease and take a stand against arthritis and its severe consequences on our veterans and citizens.”

The purpose of the summit was to educate and advocate on behalf of people with Arthritis. One of those people was my daughter, Abigail, who was diagnosed with Juvenile Idiopathic Arthritis just over a year ago. Aside from a hands-on opportunity to learn how our government works and meeting senators and members of congress, one of the best experiences for both of us was spending two days with others like us; kids who have arthritis and parents who manage their medications. While I have not yet joined in using the teenage slang of “same” every time I can relate to something someone else is experiencing, I must have heard it fifty times from my daughter and the friends she made in those two days.

We also learned a few other interesting pieces of information at the Advocacy Summit.

  • The prevalence of arthritis in our military members and veterans is alarmingly high. One out of three veterans has arthritis as compared to one out of 4 in the general population.
  • More than 300,000 children in the United States suffer from arthritis, for which there is no cure.
  • There are eight states in this country without a pediatric rheumatologist–some people have to fly to see a doctor, and for others receiving an infusion is a three-day process. And while three days out of school may seem fun at first, we learned it gets old fast and missing school means a lot of make up work and missing time in class with friends.
Max Taylor 202/321-4807
Photo courtesy Max Taylor

Beyond educating, we had the opportunity to present Congressman Rodney P. Frelinghuysen with an Arthritis Champion award in recognition of his continued support for the Arthritis Caucus and those with arthritis, especially children. The award was given by Stacey Glassman (above) who has been an advocate, along with her daughter Lexi (above), for several years. Having met both Abby and Lexi previously, the congressman was eager to hear of their progress and health.

For my daughter and I, this event also helped us understand why the Walk to Cure Arthritis was moved out of Verona Park and into the Met Life stadium. In June 2015, Team Abby was fortunate enough to be joined by approximately 60 friends, family and neighbors for the Walk to Cure Arthritis. As residents of the town, we felt incredibly fortunate to be so broadly supported and walked with pride from our house to the park, even picking up people along the way. For 2016, the walk leaves our town and moves to a larger location, which at first I thought would be cold and impersonal. What I missed was the opportunity being presented by making this change, and it’s huge for those of us looking to raise a awareness about arthritis.

On Saturday, May 14, 2016, the Arthritis Foundation is partnering with NBC4, Telemundo47 and the New York Giants to have the Walk as the kickoff event for NBC’s Health and Wellness fair. The event features a three-mile and one-mile walking course with arthritis information and activities for the entire family. Some featured events include zip lining, scuba diving and an opportunity to meet Giants players! This annual event draws anywhere from 30,000 to 50,000 people from all over New Jersey and New York. As part of the reorganization of the walk, the Arthritis Foundation has combined many smaller walks into this one event where groups within the state of NJ can participate as a whole.

In the end, the experience of the Summit was both humbling and inspiring. What we learned and the connections made with others demonstrate that there is strength in camaraderie and value in sharing your story.

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