Parents who advocate for their JIA children:  The story of two families

Parents of children with JIA are very involved in the care and treatment of their children with arthritis. In doing so they see the needs in the arthritis community, the deterioration of the health care system, and the lack of research being funded for this chronic disease. Parents see the needs that are not being met and then often personally try to fill these areas of neglect.

Following are brief sketches of two families that are committed JIA advocates. If you know of a family who has become involved or you are a family who has become involved with your child’s advocacy issues, please contact us. We would like to share this information with our readers.

Children’s Arthritis Foundation

Pam Sherwin and her family started the Children’s Arthritis Foundation in British Columbia in 2001. Having a young son with JIA, Pam quickly found out that a lot of services and facilities were lacking or non-existent. Most resources had gone to the much larger adult arthritis population.

The Children’s Arthritis Foundation mission is to address the unmet needs of the more than 2,000 children with rheumatic disease in the province of British Columbia. By doing this, the Foundation demonstrates effective projects and programs that can be implemented by others across Canada and around the world.

In three years the Foundation has directly funded and implemented six programs:

Emergency financial assistance for families, shoes for children without financial means, clinical research into rheumatic diseases of the eye, a clinical database for treatment and outcomes, a website for children/ parent education and advocacy for research and treatment at the local and national level. For more information, check out, www.childrensarthritis.com

Joshua’s Voyageurs

Joshua Gangbar was diagnosed with JIA at the age of three. For 12 years he has lived with painful joint injections, MRI and CAT scans, and a disease that just keeps coming. Two years ago, when he could no longer open his mouth to eat a bagel, he endured two very painful bouts of jaw surgery. Joshua’s father, Randy Gangbar, finally said, “Enough is enough. I can’t just sit here, I have to do something”.

The challenge for Joshua and his family was to raise money to support research of this chronic illness. They started with no money, no support, no donors and no knowledge of how to raise the money. Their aim was to support the funding of a Pediatric Rheumatology Fellow to do research in JIA at the Hospital for Sick Children in Toronto.

To raise the money needed, the family decided on a fundraising canoe trip, following a historic canoe route. Why a canoe trip? “Fur trading voyageurs once plied these waters. They carried heavy burdens”, says Randy Gangbar. “I guess my back pocket philosophy was lets help these kids carry theirs.”

To date the Gangbar family has raised over $140,000 for research in Juvenile Idiopathic Arthritis. Their sole goal is advocacy through awareness and research support for JIA. If you would like more information please visit their website www.joshuasvoyageurs.org/

Other good news for JIA research is The Arthritis Society's recent announcement that its new Strategic Plan for Research specifically includes JIA. A future issue of Voices will report more fully on JIA research in Canada.