Our daughter Madeline was diagnosed with JM at age 7, she went from strong and healthy to weak and sick in a very short amount of time. JM is a rare disease affecting only 2 or 3 children per million - a diagnosis rate about 1/60 of that of childhood cancer, for example. With such a small population, there is no money for research from the government due to such a small population, and none from pharmaceuticals because the market is too small. The Cure JM Foundation very effectively raises money and directs it as specific research projects. They represent the best chance my daughter has for a cure and for better treatment options. They are caring, supportive, and they give us hope :).
Amazing organization that is working hard to find a cure. In addition provides platforms and events where a rare diagnosed family does not feel alone instead supported like a second family.
My son was diagnosed with JDM nearly 11 years ago. There was so little information out there about this scary disease and we felt very alone, that is, until we found the Cure JM Foundation. It's made up of the most wonderful people doing amazing things to find a cure for our children. This organization has annual conferences and it connected us to other families going through the same struggles and treatments we were. Now, they are doing a lot of local events where we are getting to meet local families and learn so much about JDM. This organization is top notch!
14 years of your daughter’s life is an unimaginably long time to fight a rare disease that there is no cure for. CureJM gives us hope and support each and everyday, that a CURE will be found and along that route better treatments to fight JM . Because of CureJM, research is happening, support is there, and most importantly HOPE is there. CUREJM is Family. I know we’d be lost without them.
Being diagnosed with a rare autoimmune disease we felt so alone until we found CureJM! This amazing group of families gave us hope and support! Finding a cure is the one mission and shared by all families and CureJM will make our dream come true!
My daughter was diagnosed with JDM back in July 2017, and there were few resources out there on her disease. I reached out to get involved and almost immediately heard back from Shannon. She is amazing. She was not only someone with a wealth of knowledge, but very responsive and helpful. I'm continuously impressed with the organizational skills and effectiveness of such a small team. With such a rare disease, it gives me comfort that there is an organization out there fighting for a cure, doing the research, raising awareness, and connecting all of us together so that we do not feel alone. I've worked with hundreds of non-profits throughout my career, and Cure JM is one of the most dedicated, passionate, and organized team I have been a part of. Thank you for all that you do for our families.
Since my daughter was diagnosed 4 years ago we have struggled with fitting in. Being at the conferences and having the support CureJM gives us has been so amazing for us as parents and our daughter! I couldn't have asked for a better organization. Especially since we were able to travel to D.C. To see a specialist!!!
What an am amazing group. We went to the conference and my daughter met other girls and boys like her. She has made friends for life from all over the world!! I hope one day we are able to find a cure!!!
I am the mother of a 20 year old who was diagnosed with Juvenile Myositis at the age of 15. Soon after the diagnosis, my daughter found Cure JM online. This organization immediately helped my daughter, and our whole family, learn about the illness, make important connections and not feel so isolated. We since have gone to the yearly National Conferences where we become educated on any new research and meet other parents and kids who are in the same boat. I am so proud to be a volunteer for Cure JM,
and want to give back to all the volunteers who have been so helpful to me.
Most people find Cure JM when a child in their family gets sick. Cure JM can then provide invaluable support and information. Ultimately, Cure JM's goal is exactly what their name spells out- the best hope of finding a cure for the children with JM. I am so deeply and genuinely grateful for the wonderful people who make this organization what it is, truly exceptional!
Our son was diagnosed three years ago at the age of 7 with Juvenile Dermatomyositis. His diagnosis affects one in a million boys. We felt completely isolated. Then we joined Cure JM. This outstanding organization provided us with the knowledge, tools, and advice to make sure our son was getting the best treatment possible for this rare disease. The experts and research centers supported by Cure JM are an invaluable resource to our children and our family. Cure JM has connected us with many JM families which have provided us with support and encouragement about the battles we fight on a daily basis. Cure JM is almost solely volunteer driven by those families affected by Juvenile Dermatomyositis. These volunteers are extremely passionate about this organization, as well as fundraising with the common goal of finding a cure for Juvenile Myositis.
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.
Nearly 10 years ago, we began noticing a rash on my son's hands. 8 months later he lost control of his bowels. Then he couldn't walk over the sand dune onto the beach. It took over 18 months to find a diagnosis and help for my boy. He has juvenile dermatomyositis (JDM).
Today, the average time to diagnosis is 6 months, with many kids finding a diagnosis much sooner. Much of this is because of the efforts of CureJM.
After diagnosis, we walked my son's JDM path alone. We finally connected with CureJM four years into the journey. Then we finally met another family with JDM.
I have learned so much from CureJM. First hand knowledge from parents fighting our same battle has been invaluable. Attending conferences with physicians specializing in JDM ha left me with more knowledge and great questions to ask our treating physician.
In addition, CureJM supports two Juvenile Myositis clinics. My son has made multiple visits to one of them and now, an expert in JDM consults regularly in his care.
To say CureJM has made a difference in our family would be an understatement. I cannot even imagine the past four years without the resources CureJM provides. We are forever grateful.
We are so grateful to CureJM. My son was diagnosed with juvenile dermatomyositis nearly 8 years ago. Unfortunately, we were only peripherally aware of CureJM until four years ago when a member of the board convinced me to become involved. Nonetheless, we benefitted from CureJM funded research and joined in a research study recommended by CureJM. That study led to a longstanding relationship with a top researcher in my son's disease. We have seen her for consultations multiple times over the years, even as recently as May. Her commitment to finding a cure and improving outcomes has been pivotal for my son and so many others. CureJM made this happen.
During the past four years, the relationships I have built via CureJM have been a lifeline for me. I have learned so much about my son's illness and how to help him. I have received guidance and support. My son and I, our family as a whole, no longer walk this path alone. Instead, we are part of a community where we laugh, cry, learn and advocate together.