My Nonprofit Reviews
Mitali D.
Review for Cure JM Foundation, Leesburg, VA, USA
Cure JM Foundation was the first place we turned when our daughter was diagnosed with juvenile myositis. We have received both education and support from Cure JM. The Myositis and You book that Cure JM helped publish was so helpful at the beginning answering many of our questions. Also, we learned about the clinical research doctors who had the most expertise in JM, and our daughter began seeing one of those doctors who has been instrumental in getting her to her current state - virtually symptom free. After participating in a national conference, we joined the board, and we have been happy to support this all volunteer organization as it continues to work towards a cure.
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Will you volunteer or donate to this organization beyond what is required of board members?
Definitely
How much of an impact do you think this organization has?
Life-changing
Will you tell others about this organization?
Definitely
When was your last experience with this nonprofit?
2012
Review for Cure JM Foundation, Leesburg, VA, USA
My daughter was diagnosed 3 years ago with Juvenile Myositis, a rare auto-immune disease that causes progressive muscle weakness if left untreated. Soon after receiving the diagnosis I found Cure JM online and bought the book they published about JM. Because of Cure JM, we were immediately connected to a large, vibrant community of JM families online and provided with a wealth of information on this rare disease. Through Cure JM we came to know of the national experts on this disease, and we now travel to see one of them every 4-6 months. We had the opportunity of meeting many families in person at the 2010 national conference/fundraiser, and we are again attending the 2011 national conference/fundraiser. Being part of this community has helped us cope with what is otherwise a very lonely, difficult journey.
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I've personally experienced the results of this organization in...
that the contacts and information I have received through Cure JM has given our daughter a better treatment outcome than would have occurred otherwise. The organization has also provided a positive outlet for me personally as I deal with the changes this diagnosis has had on the whole family. It gives me hope that together our efforts could lead to a cure.
If I had to make changes to this organization, I would...
build a more robust regional structure with more in person interaction so that people have not only more accessible emotional support, but also the combined manpower for big regional fundraisers. We need to raise funds if we want our kids to lead normal healthy lives.
Will you volunteer or donate to this organization beyond what is required of board members?
Definitely
How much of an impact do you think this organization has?
A lot
Will you tell others about this organization?
Definitely
How did you learn about this organization?
internet search
What is this organization's top short-term priority?
Raising funds for the national conference in Seattle next week.
What is its top priority in the long run?
A cure
When was your last experience with this nonprofit?
2011
