My grandson was diagnosed with JDM six years ago. It was a struggle just to comprehend what this rare disease with no known cure meant for him. Information was sparse and hard to find. Then we located CureJM and we found, not just knowledge and the hope for a cure through the funding of research, but friends and understanding. Each day that goes by we find ourselves in contact with another family through CureJM. Sometimes we seek knowledge, always we find friendship, compassion, understanding and support. We cry togetherness, share joy, and are family.
My grandson was diagnosed with Juvenile Dermatomyositis nearly five years ago. There was so little information out there of this rare disease! When my daughter found CureJM the door opened to information for us. Since educating ourselves and seeking proper medical treatments, we are dedicated to the ideal of CureJM....that we find a cure and that no other child suffers with this rare disease. While there is no cure yet, CureJm works to fund research for better treatments, that elusive cure and to help being awareness to the public and the general medical field so that earlier diagnosis is possible. CureJM has become family.
I cant say enough good things about the CureJM foundation. They have helped our family with information, guidance, and connected us to other families dealing w/ JM. They have secured grant money to help with research and funded an information book about JM. With out them we would have been lost. Thank you CureJM for all that you do!
My son was diagnosed just shy of 2 years ago w/ JDM. When he was dx I had never heard of this disease. I found the curejm website and cannot express how grateful I am. The people on the board as well as other parents dealing w/ this have helped me through a very rough time in our lives. If it was just to let me vent for a moment to someone who understands or to answer quetions that I couldnt find the answers to, there is always some one there. There is no cure YET, But I feel that through the curejm foundation and the parents who volunteer there will be some day soon.
The Cure JM Foundation is a wonderful organization. Friends, information, resources, support, research, connections are just a few of the things that they have given our family.
When our daughter was diagnosed, 4 years ago, we got lucky and found the Cure JM Foundation, where we found information on her disease and learned about a book that would also help educate us. We were in panic mode and had no idea what we were getting into. Lucky for us, we found all kinds of wonderful support through the Cure JM Foundation.
Our journey has been filled with may downs and some ups, but along the way, we have always had the support of our Cure JM family. Amazing!
Cure JM did send a welcome folder for my daughter.
momof2girls1boy, I am personally saddened that your experience with Cure JM was not as good as it could have been. Providing support for families coping with Juvenile Myositis has always been a cornerstone of Cure JM’s mission statement. If there is something that we can do to improve we want to know about it so we can fix it. I hope that you will reach out soon, my email is below. Wishing you all the best, Shannon Shannon.Malloy@curejm.org
Cure JM is an amazing organization with incredible people giving of their time and expertise to help find a cure for children diagnosed with JM. I have been involved with this fantastic non-profit group since 2001 and can't even begin to say how much they have done to help find a cure for JM. They offer education on the disease, family support, grants to help fund research and so much more. Cure JM is truly saving lives!!!!
Our daughter was diagnosed 17 years ago. She has not reached remission yet, but with an organization like Cure JM we have not given up hope. At the time of our daughters diagnosis Cure JM did not exist. When we found Cure JM they treated us like family and answered any questions we had. You would never wish this disease on anyone, but knowing that there is an organization/families out there that understand what you are going through makes the journey a bit easier.
There has never been a time that we needed something that Cure JM was not there for us.
Cure JM is an amazing organization and I don't think I could ever express how grateful I am to have found them. If it were not for their existence my daughter's outcome could have been much worse. From me stumbling upon their site and realizing that my daughter's mystery condition was actually JDM to the unwavering support and information about JDM we have received from them, our lives would be very different without them. I have never met such a committed, positive, inspiring and supportive group of people and truly believe this organization's determination can lead to finding a cure.
When my daughter was first diagnosed with JDM, I had no idea what that meant. When I found the JM MOMS message board on Facebook, I slowly began to learn more. Not only did I discover things about this disease, but I also discovered things about the people behind the CURE JM Foundation. I learned that this organization does not have an office, does not have expense accounts, and they are not paid for their time. They do what they do because someone in their family was diagnosed with JDM. And even when they are having difficulties paying their own family expenses, medical bills, they still put their first foot forward to raising money to the CURE JM group hoping that one day a cure will be found. The major pharmaceuticals and drug companies may have forgotten about this disease and not doing the research needed to help find a cure because of how rare it is. It is because of these people, it will not be forgotten. I read something once; no matter how rare a disease is does not matter if your child or family member has it. I give everyone in the CURE JM site an A++.
This past weekend, I attended my first Cure JM Conference. I went there, wanting to learn as much as I could about JDM so I could help find a cure for my 6 year old grandson Kinser who was diagnosed in August of 2010. I wanted medical information, anything that I use to help him and the other children with this disease. To be honest, most of the medical information was so far over my head that I had a hard time grasping the information presented. Then, I realized the real reason I was there. It was for support, the kind you get when you realize that there is a "community/family" out there for you. To help you cope. To give you strength. To give you courage to fight against something that has no boundries or feelings like you do. The entire time I spent time with the Cure JM Foundation family, I felt courage coming from each and everyone of those in attendence. This could only have been accomplished if the Foundation existed, without them, we would be standing alone. That is something no family should ever feel when dealing with an Orphan Disease. The Cure JM Foundation deserves to be recognized for this award because they exist for the families to have hope.