Tag Archives: juvenile arthritis

A Family of Warriors: How Mariah Aquino-Truss and Her Family Fight JA

When Mariah Aquino-Truss was four-years-old, she named one of the bumpy hills near her house the “Arthritis Hill,” because every time she and her mother, Tory, drove over the hill, the bumps in the road would cause her to cry out in pain.

“She was old enough to know something was different, but not old enough to know how to process it,” says Tory.

Mariah began experiencing arthritic symptoms around age three, when she had severe neck pains that became so bad that she had difficulty moving her jaw. But when Tory would drive her to the emergency room, they were told there was nothing they could do.

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Chase Bryant Music for Mobility Concert

Chase Bryant Hosts First Annual Music for Mobility Concert to Benefit Arthritis Foundation

Chase Bryant Arthritis Foundation benefit concertNothing is more important to 23-year-old singer/songwriter Chase Bryant than his love of music or his commitment to his family. So when his 15-year-old cousin, Emma Bryant, who was diagnosed with juvenile arthritis (JA) at age 11, told Chase that she was striving to raise at least $20,000 to help find a cure for arthritis, Chase didn’t hesitate to help – and the first annual Music for Mobility Concert was born.

Music for Mobility will take place on November 22 at the Listening Room in Nashville, Tennessee, featuring Chase and several of his musically-accomplished friends, including Brooke Eden, Carlye Pearce, Derreck George and Shane Minor. All of the proceeds from the event will go towards the Franklin, Tennessee Jingle Bell Run/Walk, an annual 5K sponsored by the Arthritis Foundation to raise funds that will support vital research and education programs to improve the lives of those with arthritis.

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Bella Sorensen Rheumatoid Arthritis

Bella’s Journey: Arthritis Means a Family Must Adjust to the Disease, Too

Bella Sorensen Rheumatoid ArthritisLife is full of unexpected twists and, oftentimes, people define ourselves by how they react to these unforeseen moments. Bella Sorensen’s life was drastically altered at the age of 13 when she was originally diagnosed with rheumatoid arthritis. Bella, now 17, lives with arthritis, but, like many children and teens with arthritis, their families must live with the disease too.

This is Bella’s story—but it’s also her mother’s story to tell as well.

Dorte Sorensen, recalls a time prior to Bella’s diagnosis, “Four years ago, I would have never imagined I would be here talking about my Bella having this horrible disease in the 8th grade as a 13 year-old.”

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Keys for a Cure

The Keys for a Cure: The Ortmans Take to the Road to Support the Fight Against Arthritis

Mike and Kate Ortman Bike RideAs chair of the Arthritis Foundation’s board of directors and father of a child who was diagnosed with juvenile arthritis (JA) at an early age, Mike Ortman is no stranger to the debilitating effects of arthritis. Mike became involved with the Arthritis Foundation, along with his wife, Kate, after their son Daniel was diagnosed with JA when he was 11 years old. Now 27, Daniel, who spent most of the last two years homebound and unable to work, is still fighting to achieve everyday victories.

Over the years, Mike has watched many unique and awe-inspiring ideas the community has leveraged to conquer arthritis. From Jen and Keagan’s 1,400-mile odyssey to the JA Conference, to Tom Baltes’ 16-state ride, David Shuey’s inspiring coast-to-coast ride, and the California Coast Classic (CCC), Mike has consistently been drawn to the idea of bike riding to raise money for a cure.

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Miss Tennessee Arthritis Awareness

Crowning Achievement: Miss Tennessee Champions Arthritis Awareness

The use of her hands is incredibly important to Hannah Robison. As the reigning Miss Tennessee, her talent is playing the piano. As a chemistry major in college, she is constantly writing and using her hands in the lab. So when she developed pain in her hands, she initially chalked the pain up to overuse.

“I didn’t think much about it at first, but then the pain moved from my knuckles into my wrists,” says Hannah. “Then the doctor told me that no matter how long I’d been playing the piano, at my age, I still shouldn’t be in pain.”

After many tests and appointments, Hannah still doesn’t have a concrete diagnosis for her pain. That hasn’t stopped her from becoming a huge supporter of the Arthritis Foundation. Continue reading Crowning Achievement: Miss Tennessee Champions Arthritis Awareness

Graci Cans for a Cure

Go, Go, Go Graci! Graci Diggs Named 2015 National Youth Honoree for Jingle Bell Run/Walk

Graci Jingle Bell Run Youth HonoreeDiagnosed with juvenile rheumatoid arthritis (JRA) when she was four years old, Graci has endured multiple lab tests, biopsies, injections and medications. In spite of all that, she has often remained — in her mom’s words — outgoing, funny, athletic and honest. But during a particularly bad flare when she was seven years old, her parents saw a drastic change in their daughter.

“Graci’s knee, ankle and hip flared up, and she found herself struggling to walk and keep up with her classmates,” recalls Anna, Graci’s mother. “This left her in a wheelchair for a period of time. We could see her spirit starting to fade, and we could see her slipping into depression.”

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Miss Teen Minnesota- Nicole Doyle

From Methotrexate to Miss Teen Minnesota: Nicole Finds Strength In Doing What She Loves

Miss Teen Minnesota- Juvenile ArthritisCall it mother’s intuition. When Nicole Doyle woke up one morning with an unexpectedly swollen, hot and painful finger, her mother knew something was wrong. Even though Nicole’s pediatrician initially dismissed the thumb mystery as an injury caused by play, Nicole’s mom kept pressing for answers.

“We went to doctor after doctor, eventually ending up at an adult rheumatologist due to the fact that only about 250 pediatric rheumatologists exist in the entire United States,” recalls Nicole, now 18 years old. “As a three year old, I did not want to be there and have them examining me. I just wanted to go back home and play with my brother.”

Nicole’s visit with the adult rheumatologist is a day she will never forget.

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Juvenile Arthritis Bike Ride Arrival at JA Conference

1,400 Miles for 300,000 Children – The Final Ride

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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

Ana Villafañe Juvenile Arthritis

Ana Villafañe- “JA Doesn’t Define Me”

Ana Villafañe has come a long way since she first belted out the Gloria Estefan song, “Reach” at the Arthritis Foundation’s juvenile arthritis camp, Camp Funrise, in Miami, Fla., at the age of 9. The rising star, now 26, is portraying Estefan in a new Broadway musical, “On Your Feet!” about the legendary singer’s life. If that weren’t enough, she’s also appearing in the summer movie, “Max Steel,” as well as the new Hulu series, “South Beach.”

Her mother, Carmen Villafañe, never anticipated such success when Ana battled her first systemic onset of life-threatening symptoms at age seven. “She had a fever of unknown origin, as high as 106, 107 degrees, consistently, for a month-and-a-half,” she says. “She also contracted secondary issues; her organs were shutting down. Finally, her rheumatologist Dr. Rafael Rivas-Chacon told me, ‘If you ever see a swollen joint, call me immediately.’ The day we were leaving the hospital, Ana said, ‘Mom, look at my knee,” and sure enough, it had blown up. Dr. Rivas-Chacon was back in ten minutes. That’s how she was finally diagnosed.”

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1,400 Miles for 300,000 Children- Making Connections

Jen & James- bike ride for arthritisWhen 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.”

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