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Review for Cure JM Foundation, Encinitas, CA, USA

Rating: 5 stars  

Our daughter was diagnosed in 2002 at the age of 2 1/2 years old. There was limited information in print and online about Juvenile Myositis (JM). There was no dedicated organization to provide support or to fund research for JM. The day our family left the doctor's office after the initial diagnosis, we left with a medical journal article which consisted of about only 8 sentences and indicating a mortality rate of 30%. We were devastated. THAT WAS THEN. THIS IS NOW. Cure JM has funded a 466 page book called "Myositis and You" with updated treatment and and research information for families and medical professionals. By the way, the mortality rate now is actually less than 1%. Cure JM provides regional support reps to help support other JM families. The organization has a very active online JM family network and conducts annual educational conferences for the medical community and for JM families. Cure JM has raised over $3 million dollars for research. Cure JM is led by VOLUNTEERS, so nearly every dollar raised goes to research. Cure JM is a network of passionate and professional leaders (over 25 volunteers) putting their personal talents to work to help ensure kids with this disease can someday have remission and ultimately we find a cure for all kids. I am proud to put leadership talents to work in leading the Cure JM organization. While we have accomplished so much, there is a lot more to do to ensure children both today and in the future do not need to suffer from this disease. Please consider supporting our efforts.

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Role:  Board Member

Review for Cure JM Foundation, Encinitas, CA, USA

Rating: 5 stars  

Our daughter was diagnosed with juvenile dermatomyositis in 2002 at age 2, and Cure JM has been a constant source of help and comfort.

Cure JM is all-volunteer, no one draws a salary on the board or in the ranks. When they hold fundraisers they get sponsors to cover the overhead costs or the board members and volunteers pay these expenses themselves so the vast majority (often in the 95 to 98% range) they raise from others goes DIRECTLY to funding research for a cure (they help pay for research centers in Chicago and Washington, DC) or support programs for JM kids and their families. No major charity (United Way, Komen, Cancer Society, etc.) comes close to that.

They are also still the only NATIONAL organization that dedicates itself SOLELY to helping kids with juvenile myositis diseases and their families cope and find better treatments and a cure.

I've personally experienced the results of this organization in...

many many ways. Friendship with other JM families, insight from the JM medical community, support in troubled times, etc.

If I had to make changes to this organization, I would...

find them a wealthy patron or huge federal/private grant so more time and effort could be spent finding a cure for this devastating autoimmune disease.

Role:  Volunteer & Volunteer since nearly Day 1.