When my little girl was DX with JDM and Lipodystrophy, there was not many places I could turn to for support and knowledge. I was told about CureJM and that they were the people who could help us. I am grateful. Because of the website, we have participated in many research studies to advance the possibility of a cure or better medications. If I ever have a question or need to know more about a symptom or just to have hope for the future, this community has been there for us. This journey has been and will continue to be difficult, but I have somewhere to turn too. I HIGHLY recommend CureJM to new patients and their family/friends. Knowledge is power!
Living in Australia, we felt so isolated and helpless until we found our internet family. Then CureJM began raising funds for research, as well as providing direct support in so many other ways. This has helped so many with this illness, and will make the road much easier for those in the future. Thank you so much CureJM !!
When my son was diagnosed earlier this year, I was lost. I knew no one with JM or had ever heard of it. All I knew was my son could no longer walk or raise his arms. I felt helpless. I found the Cure JM site at 3 am through tear filled eyes on the floor of the hotel bathroom while my son slept that first night of diagnosis. It was the best source of information I found. It gave me hope and guidance. I don't feel like we are fighting this alone. Our family will forever be grateful for the Cure JM Foundation.
CureJM provides such valuable information and support for families both recently diagnosed and struggling for a long time. The people and families are caring and supportive and are always ready to help answer a question, provide a referral, or just be a shoulder to lean on.
CureJM is a wonderful charity. Not only do they raise money to find a cure for this rare disease, but they also provide ongoing support through suggestions, connections to other families, and information on current research and activities. They provide support to families that goes well beyond fundraising.
Without Cure JM we would have felt so alone on this journey with our daughter's illness. We have been able to connect with so many other families who understand this illness. This kind of support is immeasurable when dealing with a rare disease. Cure JM not only connects families, but works tirelessly to research and understand this disease and provide education to families and physicians along the way. Their efforts lead to more correct diagnosis, better treatment and hopefully one day, a cure!
Cure JM gave us the tools and information needed to get our son the best care possible. They also helped us to connect with others who have been affected by JM. We highly recommend this organization- such an awesome group of people who truly care and want to Cure JM!!!
Because of Cure JM, I learned that the medical treatment my JM daughter was receiving from her first doctor was not aggressive enough.
Because of Cure JM, I knew where to take her to get the treatment she really needed. Because of Cure JM, we received information, support and incredible sense of community with other JM families.
Because of Cure JM, my daughter is currently living a symptom-free life - strong, pain free, and active.
Because of Cure JM, new and better treatments will be developed to ensure she continues to do so.
5 stars for Cure JM. "Far exceeds expectations" is very much an understatement.
Our daughter was diagnosed at four-and-a-half years old with Juvenile Dermatomyositis (JDM), a rare disease without a cure. It was an extremely confusing and frightening time for our family. We didn’t know anyone else with the disease and we didn’t know where to turn. Then we found Cure JM. Cure JM, which happens to be the only organization focused exclusively on Juvenile Myositis, was an absolute lifesaver. Cure JM gave us what we needed most: access to the latest information and research and connection to other families who have experience with JDM and who understood the challenges we were facing. Most importantly, Cure JM provided us with hope. Through the tireless commitment of the staff and community members , Cure JM has raised considerable funds and is now able to provide research grants to world class physicians seeking a cure. Today we have a ten year old daughter (with the disease in remission!) and we can hold onto our dream that one day there will be a cure for her and other children like her.
I am 27 but diagnosed with JDM at 10. I had the rash 2 years beforge being diagnosed. When I was diagnosed we had very limited information and CURE JM was not available. My mother wrote a diary for about 2 years when I was first diagnosed to give others some information about JDM online and to see if we could find others with it as well. We were alone going through all the early stages. I see how helpful CURE JM is to recently diagnosed and also myself now. A group of moms/ dads/ grandparents all trying to raise awareness and funds to find a cure for their loved one! It is an amazing group of families that will do anything so their child doesn't have to suffer. Cure JM is amazing with funding research and hopefully getting closer to finding a cure! Everyday is a step closer! Thank you to all the strong parents/ grandparents/ families, friends and our research doctors for all that you do .. which is who cure JM is made up of!
CURE JM was the first and best information I have found on my son's diagnosis. The book"Myositis and me" was fundraised to pay for production of the only book written on my son's diagnosis. That and the support of this non-profit is invaluable to our son and family. THANK YOU for all you do Cure JM.