I truly appreciate everything they are doing!I was diagnosed at the age of 3 and when they held a conference here in San jose CA I was able to meet and relate with many others and their families!
Cure JM is an outstanding non profit, helping families deal with the complexity of an ultra rare disease while raising money for research and a cure. They spend their funds very wisely and as a result are getting amazing results on the path toward finding a cure. It's a super-well run organization with a robust volunteer network. We felt we were in great hands with Cure JM and will forever be grateful. Our son is in remission now, but should his dermatomyositis come back, Cure JM will have our back, and we will have a way to be updated on the latest research and care. The dedication of everyone involved, both paid, and volunteer is unsurpassed. Everyone involved is super-smart and dedicated, and they have created a an organization that's superb and still growing... very sensibly, and like gangbusters!
My daughter was diagnosed with juvenile myositis 12 years ago, at the age of 5. With a disease that is so rare that most doctors have never seen a single case of it, it is incredibly difficult to know whether the correct course of treatment is being followed. Because of the information and support we received from Cure JM Foundation all those years ago, we learned that our daughter's first physician was not treating the illness appropriately and we were able to switch her care to a doctor with real expertise. It very well may have saved her life. Over the years, our family has participated in the conferences, races, walks and fundraisers and have watched this incredible organization grow and evolve to even better support families and research into better treatments. Cure JM Foundation will ALWAYS be our number one choice for our charitable giving.
Five years ago, my daughter was diagnosed with juvenile dermatomyositis, and it turned our lives upside down. The medications used to treat it - oral and intravenous steroids, chemotherapy/methotrexate, Intravenous Immunoglobulin (IVIG), and others all have terrible side effects, and since there is no standard protocol for treatment, quality of care varies quite a bit and is really dependent on the doctor's level of experience and knowledge. In our case, the first rheumatologist that treated my daughter did NOT use the most up-to-date learnings and as a result, she relapsed after five months of treatment. Because of the information and support we received from Cure JM, we were able to determine that her treatment was not sufficient, and transfer her care to a JM expert. She has been improving ever since. I shudder to think where we might be today were it not for Cure JM, and I have personally seen this same story play out over and over again with other families. Cure JM has an incredibly direct impact on those affected by this disease, and I will be eternally grateful to have it as a resource.
They have been so supportive and so helpful since my son was diagnosed in 2009. They help parents and health professionals understand the disease and further research that is underfunded.
My son was diagnosed 7 moths ago. Cure JM has been such an important source of support for my family. The funds raised by Cure JM for research is so incredibly important and provides me with a sense of hope that a cure may be found someday.
Cure JM has been amazing. The organization is run so well and the family members/volunteers involved care SO much and do everything to raise awareness/fundraise to help our kids. We have been on this journey for just about six years now and they have helped us feel not so alone and give us guidance and support.
Cure JM is literally a life saver! If it wasn't for this organization so many more children would be lost to JM. They provide resources that most doctors don't know about and can link families to the top rated doctors in JM. We are so thankful to have them in our lives for the last 15 years! Thank you Cure JM!
Our daughter was diagnosed with JDM when she was just 4 years old. She is now 14 and the Cure JM Foundation has been such a blessing in our life! Their one goal is to find a cure for JM. They are the ONLY organization dedicated to this. They fund research for JM and help families find the care and treatment their children need. They educate the public and raise awareness for JM. Most of all the provide a safe place for families to interact and meet each other. With a disease like JM families can go a lifetime and never meet another JM family because of its rarity. They are an invaluable resource for families like mine...we have battled JM together for over 10 years!
When dealing with a rare disease, it is so important to have a support group behind you. Cure JM is not only a support group, but they are a family. They want to be there for you, answer questions you may have or just be a shoulder to cry on. They are group who genuinely care about you and your family, because they want to rely on you to be there when they need someone.
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!
CureJM has been an actual lifesaver for our family. My daughter was diagnosed at 15, with this very rare disease, and she found CureJM online almost immediately. This organization has provided us with so much information, referrals and education. On top of that, we have made friends who we treasure.
My daughter was diagnosed with JM as a teen and to find this foundation as support has been truly amazing! From family support, to raising much needed funds for research, to raising awareness CureJM does it all!
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.
From the moment my daughter was diagnosed, Cure JM has been the absolute best resource for our entire family-for the kids, parents and even grandparents! Cure JM turned me from thinking of JM as a scary unknown disease into an informed manageable situation. Support from the foundation and from other families is always easily accessible and the conferences and phone calls and regular updates on advances in the research is so helpful. I love Cure JM!
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 have been volunteering and fund raising for Cure JM for three years. It is so exciting to hear about the research studies that are being funded from the money we raise. It gives hope to every family with a child affected by juvenile myositis. I am also impressed by the community created in each chapter to help those with a recent diagnosis and those who are father along in navigating treatment for this chronic condition. Cure JM also works hard to educate the medical community to shorten the time for patient diagnosis.
Being involved and volunteering with multiple charities I can honestly say that the Cure JM Foundation is an amazing nonprofit! Not only have they helped my family navigate and understand the rare disease that our daughter was diagnosed with, they easily and willingly enabled me to act so that I could start making an impact as well. The level of support that they provide to JM families is outstanding and much appreciated by all who take advantage of what they bring to the table. Cure JM foundation leaders make it a personal mission to make sure your family has the ability to meet other families with such a rare disease and that you have access to some of the best doctors and treatments available to date. Thank you Cure JM!! Onward and Upward!
Cure JM Foundation is making great strides in advancing medical research of Juvenile Myositis diseases. I am proud to be a volunteer with this organization. Money donated to Cure JM truly does make a difference.
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.
Because of support from the Cure JM Foundation, children living with JM can access medical care at three Centers of Excellence!
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.
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!