When Mariah Aquino-Truss was just five years old, she was in so much pain each day she told her mom, Tory, that she “didn’t want to be here anymore.” Imagine hearing such an admission from your young daughter who was newly diagnosed with a form of juvenile arthritis (JA) known as polyarticular spondyloarthropathy.
Polyarticular spondyloarthropathy is a juvenile form of ankylosing spondylitis, a chronic, long term disease that affects the joints, ligaments, tendons and entheses. Shocked, saddened and ferociously determined to help Mariah and her family, Tory set out to find help – a road that led her to the Arthritis Foundation.
Continue reading A Dream Come True – Meet Our 2017 National Youth Honoree Mariah Aquino-Truss
When you meet Amy McCormick and her daughter, Kylie, of Hauppauge, New York, you instantly feel as though you’ve known them for years. They both consistently greet you with warm smiles and joyful hellos, chatting about their love of Hamilton, the arts and their newly adopted rescue puppy named Autumn.
Continue reading Champions of Yes: Amy and Kylie McCormick Form a Dynamic Duo to Tackle Juvenile Arthritis
Until last summer, Ellie Pruitt was your typical little girl who loved to swing, draw with chalk on the driveway and feed the fish and turtles in the pond at the back of her house in Canton, Georgia, a suburb north of Atlanta. She was funny, smart and especially witty for a soon-to-be 4-year-old (and soon-to-be big sister).
But almost a year ago, Ellie started complaining about her legs hurting all the time and feeling tired. She started playing with her toys at the kitchen table because it was too painful to play on the floor. She couldn’t sit with her legs and feet crossed, unable to bend her knees 90 degrees. Her parents thought it might just be growing pains.
Continue reading Meet the Pruitts, Warriors Against Juvenile Arthritis: “We’ve got to be upbeat and positive”
A grateful crowd cheered this morning as Jen and Keegan wheeled into Orlando for the Juvenile Arthritis Conference. This final ride marked the end of a 1,400-mile journey from New York City to Orlando by tandem bike.
“It was so wonderful to ride in with so many people cheering us on,” says Jen. “To have the kids who are attending the conference — some of them who have been following our journey all along — there supporting us we finished was symbolic of the meaning of our whole ride.” Continue reading 1,400 Miles for 300,000 Children – The Final Ride
When Jen and Keegan took off down the east coast, they expected a few bumps and bruises. What they didn’t expect is all of the people in the juvenile arthritis (JA) community they would connect with along the way. On their 1,400-mile tandem bike ride from home in New York to the JA Conference in Orlando, Jen and Keegan have managed to connect with — and even stay with — several families who are in some way affected by JA.
“There’s so much about this disease that makes you feel alone in this world,” says Jen, who was diagnosed with JA when she was 11 months old. “To connect with and try to bring people together is the whole point of the trip in a way.”
Continue reading 1,400 Miles for 300,000 Children- Making Connections
And, they’re off! This morning, Jen and her partner Keegan took off from Queens, N.Y. on their 1,400 mile tandem bike ride down the east coast. Their journey will take them to the Juvenile Arthritis Conference in Orlando. While Jen admits that the next 17 days are going to be quite the journey, at the forefront of her mind as the miles pass will be the 300,000 children who are on a journey of a different kind — juvenile arthritis (JA).
Diagnosed with JA when before she was even one year old, Jen has made a lot of friends in the JA community. There’s the 14-year-old who is a circus performer in spite of multiple jaw surgeries. There’s the friend who just celebrated her 21st birthday in the hospital due to complications from her JA. There’s the artist and cook extraordinaire who is dealing with severe uveitis. There’s the nine-year-old who’s already a well-seasoned arthritis advocate. There’s the team of brothers who both have JA, but still goof around just like all brothers do.
Continue reading 1,400 Miles for 300,000 Children – Jen and Keegan Hit the Road!
Like many people, Jen Horonjeff is traveling this summer. Don’t look for her on any planes or trains, though. Jen is making the trip from New York City to Orlando — all on her bike.
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.
Continue reading 1,400 miles for 300,000 Children : Jen Bikes Down the Coast to Juvenile Arthritis Conference