She’s not talking about her recent prom or even her summer plans to study in California. She’s talking about last week’s visit to the National Institutes of Health (NIH).
Lexi, who was diagnosed with polyarticular juvenile rheumatoid arthritis at three years old, found her way to the NIH after she shared her story with Congressman Rodney Frelinghuysen (R – NJ) at the Arthritis Foundation’s Advocacy Summit back in March. Struck by her narrative, Frelinghuysen invited Lexi and her entire group to visit the NIH and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) so that they could see firsthand the research that is being done to combat arthritis.
The group included several representatives from the Arthritis Foundation, including Vice President of Advocacy and Access Sandie Preiss, Anna Hyde, director of health policy and federal relations, Laura Keivel, grassroots manager, Nancy Beidler, Mid-Atlantic Region field area director and Michele Greco, Northeast Region director. Advocates from New Jersey and the Washington DC area came to represent their areas and to tell their stories. The group met with Stephen Katz, MD, PhD, director of NIAMS, members of his management team and several arthritis researchers on staff. Their roundtable discussion led to each advocate telling their personal story of how they are affected by arthritis.
“Each member of our group was able to share about how they are living with arthritis,” says Anna. “The researchers were very eager to hear their stories. Of course they see the numbers of people who have arthritis, but there are nuances to every story that they don’t always get to hear. ”
The visit continued with a tour, a close-up look at the research labs and a stop by the pediatric arthritis clinic. Lexi even got a peek at a machine that separates cells.
“It was so awesome to see how much everyone cared and how dedicated they are to finding a cure for arthritis,” says Lexi. “They said that there are many medications in testing right now. I feel like people with arthritis are going to see a change in the next few years.”
Anna echoes Lexi’s excitement about the visit.
“For our advocacy efforts, this visit was really beneficial,” says Anna. “Members of Congress have so much to learn about and focus on that we usually only have 15 minutes to say what we need to say. This visit gave us the opportunity to really dig in, talk about the Arthritis Foundation’s priorities and strengthen our relationship.”
While Lexi learned a lot at the visit, what she walked away with is something that all arthritis advocates can take to heart.
“Sharing my story allowed me to see and experience all of this,” says Lexi. “One story can change everything.”