My Nonprofit Reviews
Suzy C.
Review for Cure JM Foundation, Leesburg, VA, USA
My daughter was diagnosed with juvenile myositis 12 years ago, at the age of 5. With a disease that is so rare that most doctors have never seen a single case of it, it is incredibly difficult to know whether the correct course of treatment is being followed. Because of the information and support we received from Cure JM Foundation all those years ago, we learned that our daughter's first physician was not treating the illness appropriately and we were able to switch her care to a doctor with real expertise. It very well may have saved her life. Over the years, our family has participated in the conferences, races, walks and fundraisers and have watched this incredible organization grow and evolve to even better support families and research into better treatments. Cure JM Foundation will ALWAYS be our number one choice for our charitable giving.
Review for Cure JM Foundation, Leesburg, VA, USA
Five years ago, my daughter was diagnosed with juvenile dermatomyositis, and it turned our lives upside down. The medications used to treat it - oral and intravenous steroids, chemotherapy/methotrexate, Intravenous Immunoglobulin (IVIG), and others all have terrible side effects, and since there is no standard protocol for treatment, quality of care varies quite a bit and is really dependent on the doctor's level of experience and knowledge. In our case, the first rheumatologist that treated my daughter did NOT use the most up-to-date learnings and as a result, she relapsed after five months of treatment. Because of the information and support we received from Cure JM, we were able to determine that her treatment was not sufficient, and transfer her care to a JM expert. She has been improving ever since. I shudder to think where we might be today were it not for Cure JM, and I have personally seen this same story play out over and over again with other families. Cure JM has an incredibly direct impact on those affected by this disease, and I will be eternally grateful to have it as a resource.
More Feedback
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