Diagnosed with juvenile idiopathic arthritis (JIA) when she was just 11 months old, Jen is finalizing plans to ride on a tandem bike with her partner from her home in New York City to the Arthritis Foundation’s Juvenile Arthritis Conference in Orlando. The trip, more than 1,400 miles, will take approximately 17 days.
Jen plans to travel along the east coast for the duration of the trip. Along for the ride is her long time partner, Keegan, with whom she has been training for months. Both are avid bikers, biking to and from work each day and for exercise and fun on the weekends. Jen and Keegan plan to bike about 100 miles per day and have left themselves some wiggle room to deal with any unexpected issues, including an arthritis flare.
“We plan to take the time to recharge in hotels and with families we meet along the way,” says Jen. “If we need to slow down or take a day off, we will. We’re just going to take it day by day.”
While the trip is certainly going to be a combination of fun and hard work, Jen hopes she can
raise awareness of juvenile arthritis, while also providing inspiration to families who are dealing with juvenile arthritis.
“I hope to connect with families along the way to give them hope that they don’t have to be limited,” says Jen. “I want them to know that even with arthritis, you can still challenge yourself to do great things.”
Jen knows a thing or two about doing great things. She recently finished her doctorate in ergonomics and biomechanics. Her thesis was on physical activity and juvenile arthritis, and her research focuses on rheumatology.
“When I was diagnosed with juvenile arthritis in the 1980s, doctors told me not to exercise,” recalls Jen. “Obviously the message is different now. I believe being active as a child helped my arthritis. With cycling, I have found an exercise that agrees with my body.”
When Jen arrives in Orlando, her work will be far from done. Just as she has for the past several years, Jen is attending the conference as a volunteer.
“The first time I ever volunteered at the conference, I was 18 years old,” says Jen. “I go every year now because it has changed the trajectory of my life in profound ways. I am so invested in the cause.”
Jen helps lead the young adult program, geared specifically toward children with arthritis who are 18 years or older.
“I work with the group that is really starting to transition from childhood to adulthood in many different ways,” says Jen. “Our goal is to empower them, teach them to advocate for themselves and give them a solid knowledge base. We also deal with issues such as body image, relationships, insurance and transitioning from pediatric to adult care.”
While Jen knows that traveling south during the heat of the summer will present challenges, she also knows that it will fulfill her in ways that she hasn’t yet imagined.
“I am excited and passionate about this journey,” says Jen. “The road might be tough at times, but if I can go to bed at night knowing that I showed people that we can live beyond this disease, I will feel like we’ve met our goal.”
Jen and Keegan take off on their ride next Friday, July 3. You can follow along on their journey on their blog. You also can donate to their cause here. All proceeds benefit the Arthritis Foundation and their mission to conquer everyday battles through life-changing information and resources, access to optimal care, advancements in science and community connections.
Stay tuned as we follow them on their way!
- 1,400 Miles for 300,000 Children- Making Connections
- 1,400 Miles for 300,00 Children- Jen and Keegan Hit the Road!