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volgirl71

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2 reviews

Review for CURE JM FOUNDATION, Encinitas, CA, USA

Rating: 5 stars  

Cure JM is a fantastic resource for newly diagnosed and those who have been battling Myositis for years. The organization provides research to help find a cure for the disease, and Cure JM also provides incredible support for the families struggling with this disease.From the first day of my daughter's diagnosis when I found Cure JM on the internet until now just over two years later, I cannot even count the times that I have gotten answers, sometimes in the middle of the night, to questions or concerns. Additionally, Cure JM provides resources for my teenaged daughter to help her not feel so alone with a rare disease. Unbelievable organization with fantastic leadership and members!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

How did you find this group?

Internet searc

Role:  Client Served

Review for CURE JM FOUNDATION, Encinitas, CA, USA

Rating: 5 stars  

Cure JM has been an amazing resource for our family after my daughter was diagnosed in June 2010 at the age of 11. When her pediatrician knew very little of the disease and her rheumatologist having only a few paitents of this rare disease, Cure JM provided us with information and resources that were amazing! The website provided access to others who have this rare disease and also provided a great deal of information and forms for scools, tips for the family, etc.

On top of all of the benefits Cure JM provides to families, it is a huge funding process for the research that is desperately needed to have a chance to cure Juvenile Myositis. As it is so rare, there is not a lot of research to help these kids. Cure JM has provided funding to a specialist who my daughter sees once a quarter out of state, and we see first hand the benefits each time we go. Whether it is a research study or a new piece of equipment to better analyze the damage to the capillaries, it is attributed to Cure JM.

As a volunteer and fundraiser, Cure JM has been very supportive of my family and daughter as we have used the Cure JM fundraising and events to raise awareness of the disease. For us, on top of the physical symptoms and pain, having people not understand this disease is sometimes just as painful. We are so very thankful for Cure JM!

Role:  Volunteer & I have raised awareness by speaking to others in the area about this disease, appeared on TV and in newspaper with my daughter, and raised money running marathons and doing triathlongs to help Cure JM.