CURE JM FOUNDATION
July 20, 2012
Cure JM Foundation has been there to support us from the very day my daughter was diagnosed with Juvenile Dermatomyositis. I emailed each member of their board from the website about who the top doctors were and how to get in touch with them. I had responses back in no time at all. They also let me know about their free educational conference that was coming up in 3 weeks from that day. WIthout these wonderful people and this amazing group of volunteers we would not be where we are today with our daughter! Great people all in the same shoes. It is ran by the very parents that are dealing with the same disease and have been in your shoes! They support research from very caring and compassionate doctors. It is more like a family of everyone who becomes involved. It is more than just a foundation who wants your money, who is not in your shoes, who is going to pay their own salaries. This is a group of people who are doing everything they can to try and save lives!
Would you volunteer for this group again?
For the time you spent, how much of an impact did you feel your work or activity had?
Did the organization use your time wisely?
Would you recommend this group to a friend?
When was your last experience with this nonprofit?
CURE JM FOUNDATION
June 17, 2011
I found CureJM website the day my daughter was diagnosed with Juvenile Dermatomyositis. I found the board members personal emails on the site and sent them each an email explaining that we had just been diagnosed and did not know what to do. I received emails in return very promptly and they have supported us through this process. They were having their annual educationalconference and fundraiser within 3 weeks of our diagnosis. They gave me all the information and were so great and welcoming when we showed up.
Without the personal help of this organization and definitely the research they have funded my daughter would not be in the shape she is in today. The Myositis and You book is like a bible to many JM families. This was a great project done by this organization.
The passion of this organization stems from the fact that it is led and driven by people directly affected with this disease. It is not a hobby or a cause to support. It is every day life that the board and all of us have to live and deal with. A cure for our kids is not a community service project, but a real life passion!!!
I've personally experienced the results of this organization in...
Our daily life we connect to other families dealing with the same problems. We share information and educate each other. This organization is the spine for families with this disease and supports many of us daily.
Ways to make it better...
If I had to make changes to this organization, I would...
Try to help get National recognition from a strong support network. See if we could get some sort of government help or support.
Volunteer & I have participated in 3 annual education conferences for CureJM. We have held fundraisers locally for CureJM. I serve on the advisory council as a regional contact for AZ, NM, TX, and OK. I participated in the Chicago regional fundraiser by running a .