Cold Spring, Ky. resident, Jenna Sharp will join other children and hundreds of advocates nationwide at the Arthritis Foundation’s annual Advocacy Summit and Kids’ Summit on February 26th and 27th in Washington, DC.

While on Capitol Hill, Jenna and her parents, Ken and Nancy, will lobby legislators for increased research funding and passage of the Arthritis Prevention, Control and Cure Act. “Our family is proud to be part of this advocacy effort,” says Ken Sharp. If passed, the Arthritis Prevention, Control and Cure Act would be the first arthritis-related legislation in more than 30 years and would:

• Accelerate research that may lead to improved treatments and a cure for juvenile arthritis. Currently the nation spends $40 per child with arthritis.
• Address the nationwide shortage of pediatric rheumatologists. There are parents that must drive more than four hours one way for their child to be seen by a specialist.
• Allow for investment in a nationwide public health initiative to reduce the pain and disability of arthritis. Arthritis is the nation’s leading cause of disability, costing the U.S. economy $128 billion annually.

“Juvenile arthritis often flies under the radar in both awareness and government funding,” says Barbara Perez, president of the Ohio River Valley Chapter of the Arthritis Foundation. “This painful disease is devastating to children and families and has severe physical, emotional and financial effects.” Passage of the Arthritis Prevention, Control and Cure Act is critical to reducing the pain and disability of the 300,000 children and 46 million adults with arthritis,” she says.

Juvenile arthritis is a common disease, but it can be difficult to diagnose and treat. Parents’ lack of awareness of early warning signs, along with the nationwide shortage of pediatric rheumatologists compound the problem. Worse yet, the longer treatment is delayed, the more potential there is for irreversible joint damage to occur.

Once diagnosed, families like Jenna’s face multiple challenges. Without treatment, simple tasks like getting dressed, holding a pencil or going up and down stairs can be very difficult. Daily medication, strong faith, a positive attitude, ongoing physical therapy and a team of healthcare specialists ranging from a pediatric rheumatologist to a pediatric ophthalmologist help to keep Jenna’s arthritis under control.

“The way Jenna deals with her disease is incredibly inspirational. Although she has her limitations, Jenna has been able to keep playing sports and remain very active in lots of school activities. She worries about other children being affected by arthritis and is committed to lobbying for increased funding for arthritis research and treatment,” says Ken Sharp.

Time and expense is another burden faced by families. Medication alone can cost thousands per year. With fewer than 200 pediatric rheumatologists in the U.S., it’s not uncommon for families to travel hours or even out of state to see a specialist.

“It’s simply unacceptable that so little federal money – just $40 per child – is spent on a disease that seriously affects so many kids,” says Ken Sharp, Jenna’s father. “Like other families going to the Summit, Jenna and I will be taking our case directly to the nation’s highest lawmakers. It’s time our children’s voices be heard and action be taken,” he said.

Source: Arthritis Foundation, Ohio River Valley Chapter