I have been a volunteer with the CureJM Foundation shortly after its inception. My daughter was diagnosed with Juvenile Dermatomyositis(JDM) in 2004, when she was 4 years old. JDM is a rare autoimmune disease affecting only 2 -4 children per million, with symptoms ranging from skin rash to weakened muscles as a result of inflammation. The Cure JM Foundation raises money with the purpose of determining and funding meaningful research projects, while raising awareness of signs and symptoms within the medical community so that diagnoses can be made promptly. Within the organization, there is a wealth of knowledge to assist and guide families with children undergoing treatment and navigating the medical world. CureJM is invaluable for patients, their families, and any and all hope for the best possible treatment and a cure for this rare disease.
I’ve been a volunteer for Cure JM since my daughter was diagnosed early last year and I cannot say enough about this organization and the team that runs out. They are SO supportive to all JM families, near and far, and just SO on the ball when it comes to fundraisers, CureJM walks, family requests for advice or information...the list could go on forever. This organization just blows me away on a constant basis. I’m so proud to be involved with such amazing people.
I am proud so say that I am a volunteer with Cure JM. This organization is driven to find better treatments for Juvenile Myositis diseases. Cure JM is dedicated to keeping it's overhead low so that the most possible of every dollar donated can be directed towards the goal of finding a Cure for Juvenile Myositis. There is nothing in the world that I want more than a cure for my daughter who has JM.
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.
Even with 1000s of amazing causes and charities, Cure JM is my number one choice to donate money and has been for almost 10 years. I started donating to Cure JM when I learned a dear friend's child had JM. I've continued to donate to Cure JM because of the amazing things the organization does to further research and support families. Cure JM is fiscally responsible and ensures nearly all of the money raised is used for JM research. Equally important, Cure JM does an amazing job supporting families who children are battling JM. After reading the Impact Report my parents began to donate to Cure JM and have continued to do so for the same reason I do. My 9 year old boys also help with our family garage sale every year to raise money (including selling their toys) to donate to Cure JM, and talked their 7 year old friend next door into donating all of the money from his lemonade stand one day! It's easy to donate to such an amazing organization where you can see the positive impact.
Cure JM is comprised on the most passionate and giving families I've ever met. I first learned about Cure JM as one of my dear friend's son was battling this horrific disease. From the get go I learned how much time, energy and commitment everyone associated with Cure JM puts toward helping every family with Cure JM and their amazing and relentless focus on fundraising so one day there will be a cure. I started donating to Cure JM about 8 years ago and they continue to be my # 1 charity of choice. I know with Cure JM my money is going to critical research. My friend's son lost his battle. While he endured painful treatments he was always making people laugh and an inspiration to all to find a cure. I'm forever grateful Cure JM is ensuring we fund that critical research so one day these precious kids and their families won't have to endure JM/JDM.
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.
My experience is as a monthly donor. CureJM is not only worthy but is highly efficient. The main purpose of all fund raising is to support research that will lead to a cure. A secondary purpose is to inform doctors about JM so that the disease can be identified in a child as soon as possible. CureJM is efficient and has very low overhead. I am confident that my money is well spent and that CureJM is critical if a cure for JM is to be found.
The Cure JM Foundation was so important to our family when our grandchild was diagnosed. We found the website was a place where we could gather information, then ask questions of other JM families. We always felt someone was on the journey with us. We were never alone, even though JM is so rare.
We feel confident that any money we raise will go directly to research studies to find a cure. Cure JM is very transparent.
Nana and Papa
Cure JM is a wonderful organization dedicated to finding a cure for Juvenile Myositis. I am proud to raise awareness and funds for these children. Over 91% of all donations go directly to research to find a cure.
My daughter was diagnosed with JPM in 2006. When you are told your daughter has a very rare autoimmune disease in which her body is working against itself, it is overwhelming. By the time of diagnosis, my daughter could barely walk, was in constant pain, and suffered from continual fatigue. JPM had taken so much away from her. The treatment was very aggressive, the drugs laden with side effects, and recovery was slow. A volunteer from Cure JM was often at clinic and she introduced us to organization. The support that Cure JM offers families is tremendous. Yes, the disease is rare and each case is very unique but we are not alone. Cure JM provides a community for families dealing with JM diseases. Above all of this, Cure JM and it's families raise funds to pay for medical research. This is key to finding better treatments, finding the cause, learning prevention, and someday finding a cure. I have chosen to join all of the other volunteers with Cure JM and dedicate my time to offering family support and helping to raise funds.
I first became aware of the Cure JM Foundation through a co-worker who's son had been diagnosed with JDM. I have seen first hand the good they do through outreach and support for the families and the kids. Plus they are getting money over to researchers to support the finding of new treatments. A small non-profit doing great things.
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!
My daughter was diagnosed at age 12 with JDM. We watched her go from being an all-star catcher and basketball player, to being dependent on a wheelchair in just 5 months. At the appointment where we were told of the diagnosis, our doctor gave us the best advice, get involved with CureJM. When you are first diagnosed, you are like a dog on a leash. You go and do whatever you are told to do to get your child better. What CureJM does, is it sets you free to discover the world of myositis from the eyes of the parents who are with you on this journey to find a cure. You are free to ask questions, express yourself, and find peace from the doctors office and hospital visits. This foundation provides you answers, compassion, togetherness and friendship so you can get through your day and stay strong for your child. CureJM has found a way to ignite the fire of hope in the newcomers, while stoking the fires of the experienced, all in the interest of one thing, finding a cure! God bless CureJM!
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 !!