Cure JM Foundation

The Cure JM foundation is a group of caring families doing grassroots fundraising to raise money for a rare children's disease. It is so well run, and the money is supporting real research that is making a real difference in children's lives!

When my daughter was diagnosed with JDM at age 2 and immediately admitted for intravenous treatment, I felt the most helpless I’ve ever been as a parent. I couldn’t take away her pain, I couldn’t prepare her for what was to come - because in those beginning days, I had no idea what this disease was. Cure JM not only educated me to help me become the best patient advocate I can be, but the team also became a direct line of support to me. I feel confident in the foundation’s work, knowing their commitment to finding better treatments - and a cure - is at the heart of their mission.

The Cure JM Foundation has been a life-changing source of support, hope, and community for our family as we navigate Mackenzie’s journey with juvenile dermatomyositis (JDM). From the moment we connected with them, we felt embraced by a network of families who truly understand what it means to fight this rare disease. Their dedication to funding critical research has given us hope for better treatments and, one day, a cure. The resources, advocacy, and incredible events like Walk Strong have not only helped raise awareness but have also given Mackenzie a platform to see that she is not alone in this fight. We are forever grateful for the Cure JM Foundation and the difference they continue to make in our lives and the lives of so many others

We found this organization in the months following our daughter’s diagnosis. The support we received was so timely. It was easy to give to this organization seeing not only the way they serve families like mine but also the research they fund that will support patients like my daughter for generations to come.

Getting Rooney’s diagnosis felt immediately isolating, no one we told knew what it was, and the diagnosing doctor shrugged her shoulders on what to do next. I immediately searched online and found Cure JM. Within hours, I had people reaching out to me, letting me know we weren’t alone. I received countless emails, texts, and phone calls. I had a Facebook group I could go to with any question, big or small. What felt so isolating at the beginning, now felt like we were a part of a wonderful community of warriors, fighting right alongside of us. That’s not normal, but it should be.

Being able to have Rooney treated at Duke by Dr. Reed has been the biggest blessing, one that I don’t think would have happened without Cure JM’s partnership. We found Dr. Reed through the Cure JM website and when we called to make an appointment, mentioned Cure JM, and we were able to see her within two weeks. Knowing that Rooney’s doctor is committed to research and finding a cure means the world to us.

We remain ever grateful to CureJM for being there in those early days. I can’t imagine getting through them without the support and kindness of the other parents and grandparents. Cure JM gave us a way to come together and work together and move forward with hope. So our thanks for being so instrumental in gathering us together.

We are so thankful for Cure JM! When our daughter was diagnosed 14 years ago, we found Cure JM right away and it was a lifeline for us. We were able to get support from other people who "spoke the same JM language". We got support from the foundation and found the resources that we needed to get through the difficult times that we were facing. Over the last 14 years, Cure JM has continued to work hard to grow the resources, improve communications with families and give valuable education from doctors. The partnership between the physicians and the family is second to none. Cure JM has matured into an even better organization and we are so fortunate to have this incredible resource.

I first learned about the Cure JM Foundation nearly 12 years ago when our granddaughter was diagnosed at age 5 with Juvenile Dermatomyositis (JDM). We had never heard of this disease before. During my daughter’s research she found the Cure JM Foundation website. After watching an outstanding video on the website I learned that we were not alone in this fight. After 8 years of aggressive treatment at Cincinnati’s Children’s Hospital our granddaughter was found to be free of active disease and taken off all medications. She has been free of active disease for 3.5 years and a very active 16 year Jr in HS.

Along the way I have become more involved with this outstanding Foundation building on the efforts of others. I have seen considerable growth and outreach in last 12 years including financial support of research, clinical studies, expansion of Centers of Excellence, and formation of a clinical care network to make excellent patient care more available. In addition to the financial support the Foundation provides, it provides tremendous support for families of kids with JDM by providing information emotions support found no where else. The Foundation is small, and very effective. It is efficiently run by its dedicated staff and volunteers who work tirelessly to find better treatments for their kids. It is my pleasure to support and highly recommend the Cure JM Foundation.

Thankful for this amazing organization! When my daughter was diagnosed at age 3 my husband and I felt so overwhelmed and scared. We found this organization who offered support, compassion and extensive knowledge to help put us at ease and prepare for the treatment journey for our daughter. We have met other families in the same boat as us and provided support for each other.

Cure JM gives us hope. It funds the research that is leading to better treatments for all of the children with Juvenile Myositis. I hope that some day my daughter's JM will be managed with drugs that do not have so many nasty side effects. I believe in the cause and fully support Cure JM.

Cure Jm has helped my family find community when facing a scary diagnosis, learn information about this rare disease, and above all is funding the research that helps my daughter get better and better treatment and one day we will find a cure!

I was diagnosed with Juvenile dermatomyositis when I was 7 years old and hit remission when I was 18. Back then there wasn't that much information and there wasn't a group or as much support as there is today. This group is filled with amazing, loving, dedicated parents, grandparents and youth. So much support and information. They do an amazing job creating awareness, keeping up to date with new research and studies as well as fundraising. I have nothing but great things to say about this lovely bunch.

CureJM saved my life! When I was diagnosed at 15 it was easy to give up. CureJM gave me a community to learn, meet other people who understood what I was going through and a way to give back. The biggest thing has been the research and trials CureJM has conducted to help myself and others get better treatment and have higher qualities of life as a result. It has also given me a place to grow professionally and given this disease a silver lining. Everyone who I have met through CureJM has had a huge impact on my life and I am so grateful for the family I have gained. I only wish I could give them more stars

I have been volunteering with this organization for more than seven years, since just after my daughter was diagnosed with juvenile myositis. In that time, I am amazed at how Cure JM has grown and increased its reach and service to families with JM.
At the end of 2022, Cure JM received a prestigious award from the Chan Zuckerberg Initiative for research to identify new biomarkers and improve personalized care in JM. Cure JM now partners with 5 Centers of Excellence and 20 hospitals in their Clinical Care Network to improve access to treatment for families across the country.
In 2022, Cure JM marked its 20 year anniversary. So much has been achieved in the first 20 years, I am optimistic about the future for kids with JM.

Since our daughter was diagnosed with JM, CureJM has become a central pillar of our lives. The team at CureJM was incredibly responsive in the early days, helping us find information and connecting us with other families who were going through a similar experience. This community aspect was critical in the early days of dealing with the news we had received and helping our child adjust to this new normal.

As we have gotten to know the organization better we have come to understand how important it has been in driving the research agenda for JM that has steadily improved the care for children with JM for more than 20 years.

Since joining Cure JM over 15 years ago, I've held many volunteer positions, including board member, research committee co-chair, International Family Support Director and others. I am now the Mental Health Coordinator. Cure JM has done amazing work over its 20 year history from cutting diagnosis times by 75%, to increasing the research grant pool so we now have many more treatment options, to helping educate many doctors about best practices for this rare disease. Our "small but mighty" organization is staffed now by passionate and hard-working, talented individuals who have been touched in some way personally, or resonate with our mission. We are so fortunate to do what we do; most of our money comes from grass-roots fundraising. It is our families that provide the bulk of our support. And helping families is what we are all about.

Cure JM is a wonderful foundation for patients, families, and even clinicians to learn more about juvenile myositis. This foundation not only raises money for finding a cure, but they also provide up-to-date information about trials, drugs, treatments, and more. They're town halls (videos with actual doctors) offer a ton of information to families directly. They're dedicated to finding a cure and helping the care of those with this rare disease all over the world.

Wonderful non-profit! Funds are well spent on research. Researches a much needed cause.

Cure JM has been a source of resources, support, and encouragement for families impacted by this rare disease. The dedicated team of researchers work diligently towards better treatments and hopefully a cure.

Cure JM had made all the difference when it comes to the diagnosis of my daughters rare disease. It connected us with a community that we wouldn’t have otherwise and helps us feels supported. Knowing Cure JM is funding research for better treatment and a cure gives parents and patients like us hope for a better future!

Juvenile myositis is such a rare disease that when my son was diagnosed I often felt so alone in the journey. Finding the Cure JM Foundation 2 years after his diagnosis was a Godsend. CureJM provided me with so many resources and support that I couldn’t find anywhere else. They truly are an amazing organization.

Our was diagnosed with JM in 2018. We are so thankful for the entire Cure JM community. They are the only nonprofit that supports kids and their families with this rare disease. The their centers of excellence we gained access to the leading specialists in the world to help our son. More importantly everyone at the organization truly cares. I can assure you they pour every resource possible to advancing research for our JM kids

My son was diagnosed with JM 5 years ago and we were fortunate to find Cure JM right away. The community and resources they provide have supported our family throughout our journey. And, the research and centers of excellence they support have been critical in aiding my son's treatment plan.

When my daughter was first diagnosed with JDM, I was terrified and overwhelmed. I found the CureJM website through a Google search, and it quickly became a bright spot in my research and understanding. The organization has some of the most helpful resources for parents that I have come across in all my research, but the most helpful part of CureJM has been my ability to connect with other parents going through the same things. This sense of community that CureJM has established and cultivated has help me understand how to support my daughter and how to not feel so isolated while do that. I am beyond grateful for this wonderful organziation.

Cure JM has been the backbone our family's journey as my son battles juvenile dermatomyositis (JDM). Cure JM offers community, learning opportunities and hope through the Cure JM Centers of Excellence and research funding. My son has battled JDM for 14+ years and we would be lost without all of the support we have received over the years.

Juvenile Dermatomyositis is a rare autoimmune disorder, so it is a tremendous blessing for the affected families to find support groups and helpful resources through Cure JM Foundation. It's a foundation that was started by families whose child and grandchild were impacted by this rare illness, so all the donations are dedicated to find a cure for juvenile dermatomyositis. Without a foundation like Cure JM, families and patients would be negatively impacted by this delibitating illness without seeing any medical advancement for treatment.

In the late spring of 2012 my granddaughter, age 5, was diagnosed by a local Rheumatologist with Juvenile Dermatomyositis (JDM). We had never heard of this disease before. During my daughter’s research she found the Cure JM Foundation website. This website offered considerable information about JDM. I watched a video on the website which described my granddaughters symptoms very well. The Cure JM website provided much needed support for my daughter in her search for a diagnosis of my granddaughter’s symptoms. I never expected to see so much detailed and relevant information about a rare disease in one place.

When my granddaughters symptoms did not improve with local treatment, my daughter researched other treatment options. As a result, she found that Cincinnati Children’s Hospital (CCH) was a leading hospital in the treatment of auto immune diseases such as JDM. My granddaughter was in critical condition, and was immediately admitted to CCH for aggressive treatment with powerful drugs. As a result of this aggressive treatment protocol by the dedicated CCH staff over 8 years, her disease was brought under control. My granddaughter will be 15 in a couple of months, and currently has no active disease. However, JDM could raise its ugly head again any time.

My daughter, granddaughter, and I attended our first Cure JM National Education Conference in Chicago in 2013. It was an extremely valuable experience to interact in person with other patients, parents, grandparents, Cure JM Foundation board members, and doctors treating JDM. It was even more important to my 6 year granddaughter to see other kids with the same disease. She learned that she was not alone in fighting JDM because of the Cure JM Foundation. Attending this conference and a subsequent conference in Washington DC in 2018 solidified our support and appreciation for the Cure JM Foundation.

Since I was introduced to the Cure JM Foundation nearly 10 years ago, the Foundation has raised several million dollars from private donations for research and support of the organization. Nearly 90% of the dollars raised support research grants on a search for better treatments and a better understanding of the disease. Cure JM support of research, clinical studies, expansion of Centers of Excellence, and formation of a clinical care network continues to move ahead. Each of these programs continue to have a positive impact on treatment options and availability of treatment to more patients. Several new treatments may be available in the foreseeable future as a result of the investment by Cure JM Foundation in research. In addition to the financial support the Foundation provides, it provides tremendous support for families of kids with JDM by providing information found no where else. The Foundation is small, and very effective. The last couple of years have been difficult due to the COVID-19 pandemic. The pandemic has not diminished the effort and enthusiasm of Cure JM staff and volunteers. The business of Cure JM moves ahead with frequent ZOOM calls and webinars. It is efficiently run by its dedicated staff and volunteers who work tirelessly to find better treatments for their kids. It is my pleasure to support and recommend the Cure JM Foundation.

I have been involved in Cure JM for 15 years, ever since my daughter was diagnosed at age 6 with JDM. She has been in remission now for 7+ years and I credit Cure JM's network of medical experts in helping her get there. For years Cure JM was all volunteer run and raised millions of dollars for research and family support and education. As a result, they've built a dedicated network of clinicians and researchers who are making a difference in finding new and better treatments with fewer side effects and reducing the time to diagnosis with a steady stream of education for medical providers. Additionally, Cure JM is piloting mental health support programs for families and providers and pressing our Centers of Excellence to integrate emotional support into al l clinical care.

CureJM is not only a wonderful organization for parents and support but through fundraising they able to find more research grants and gets us closer to a CURE!
Cure JM gives all of us with kids with JM HOPE!

I have full confidence in Cure JM Foundation after learning specifics on how our fundraising efforts are being allocated to meaningful medical research.

I was able to met other teens living with JM at Walk Strong to Cure JM and other events. This means a lot when you have a rare disease. Great group of people working together for a cure.

I was introduced to Cure JM Foundation on the day of my child was diagnosis, nine years ago. Cure JM makes hope a reality. Every effort means we are getting closer to better treatments and a cure. So grateful for the Centers of Excellence where our children can be seen by experts in JM, the medical research being funded that is focused on impactful progress and the supportive community of families.

Cure JM has provided is so much support and connected us to so many families that were experiencing or had experienced the exact same thing. That sense of community helped us get through the ups and downs of our daughter's diagnosis.

My daughter was diagnosed with JDM in 2002. As a mom of a newly diagnosed child I felt scared and lost. I needed information and support. That’s when I found Cure JM and they were able to supply all of that for me. Cure JM is more than an organization, it’s a family! - Angie D.

Cure JM has been a lifeline for us after our daughter's diagnosis. The annual conference was invaluable when we went, the updates on medications and developments are clear and consistent, and we appreciate all they are doing for our JMer.

This charity is truly wonderful. Not only are we proud to donate as a family, but we also have a daughter with JM. It's a cause near and dear to us. The knowledge, support, personal touch, and dedication of this charity and staff have to those who battle this rare disease is incredible.

Our son was diagnosed with Juvenile Dermatomyositis at age 8. This disease affects 3 out of 1 million children. Because of its rarity, parents and caregivers acted, creating CureJM. As the name, it works and raises money for research to find a cure. No frills or high paychecks exist, just working people working hard to find something to help their loved ones heal. And, Cure JM makes raising money easy. They prepare the fundraiser format where you plug in your information. Voila! I love this group.
Margaret Lee

When our son was diagnosed with Juvenile Dermatomyositis, we felt so alone and overwhelmed. JM is so rare, that we knew of no one that even had the disease. We found Cure JM and instantly we had a support group that was traveling the same journey as our family. They provided us with detailed information about JM that could not be found anywhere else in any of our searches. The most important thing is that the money that they raise goes to support research to help improve treatment and hopefully find a cure for our children.

CureJM was a lifesaver for our family after our daughter was diagnosed with JDM. Not only were we scared but it was a very lonely time for all of us. CureJM helped up to understand the disease, provided the education and referrals to doctors who were experts in the field and most importantly, provided a community of friends and confidants for my daughter and us. WE have been part of the organization since 2012 and are so proud of all the amazing research that CureJM is doing on new treatments. I am so proud to be part of this organization.

Cure JM is the only organization actively funding research and drug development for this rare autoimmune disease that effects millions of kids! They support families and the children fighting this disease each day! My family is so thankful for the role they play in our sons battle with JDM

My daughter was diagnosed with JDM before she was even 3. Through Cure JM, I found support, contacts and research information. It is so important to invest in research for JDM, given how rare it is and Cure JM makes it its mission to find a cure.

Thank you Cure JM.

I have a granddaughter who has had JM for 10 years. I have attended a national conference to learn more about it. I have donated hundreds of dollars to help support it, and wish that there was a cure. I was hoping that by the age that she is now, 17 years, she would have gone into non-medical remission. She has not. She continues to require IgG infusions every 3 weeks and she is definitely immunocompromised. The covid virus has required her to stay at home from school and minimize her exposure. She, as well as so many others need to find a cure!

CureJM helps fund research and helps families navigate these diseases with their children. Such an amazing organization!

Cure JM and the individuals who lead this foundation are my saving grace. As a mom to a young child (2) with a rare and life-threatening disease, I found myself struggling to get information I needed. Once I connected with Cure JM, all of my questions started to get answered. They've become my lifeline, my "google search," and my confidants on this journey. Not only do they provide resources and information to families like mine, they're a support system that is so desperately needed when a family received life changing news like a JDM diagnosis.

My daughter was diagnosed with Juvenile Dermatomyositis in 2009 at the age of 6. I discovered CureJM 2 years later and have felt supported and educated ever since. They are mostly a group of fellow JM parents who understand what we are going through and how to be most helpful.
The annual conferences are an incredible opportunity to connect with other parents and learn about medical research, lifestyle measures and mental health supports that can empower you to better advocate for your child.
The book they have written, Myositis and You, is packed with useful information and can be used as much or as little as you need. As my daughter ages, I am especially grateful for the webinars regarding mental health and transitioning to adult care.
As I understand it, our foundation is the only one fundraising for this disease. CureJM has taken on the challenge of funding future treatment research with energy and commitment. I have been so motivated by the small group of people running this organization.

CureJM has been an integral part to my Daughters support network. CureJM provides a voice in many arenas to advocate on behalf of the children affected by Juvenile Myositis. In fact, they are the only advocacy group for this rare disease. CureJM's strong leadership chain is nothing less than stellar. The foundations innate ability to ensure there is the appropriate amount of funding to find a cure is incalculable. Without CureJM my Daughter would not be closer to having a cure. I am wholly confident in the foundations ability to fight for a cure in the future. Thanks for all you do!

Cure JM is working so hard to find treatments and a cure for JM. Ot has been a pleasure to work with them in their research, awareness,and fundraising events.

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!

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!

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.

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!

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!

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.

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!

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.

Charles Krider
Lawrence, Kansas

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

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.

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.

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.

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 16 years ago with juvenile dermatomyositis. Cure JM was in its infancy but was so supportive and helped guide us through a very difficult time. Even though our daughter is in remission we are still involved with the Cure JM Foundation. We are so grateful for all the guidance and knowledge we have received over the years. There is no better nonprofit around!!

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.

As a donor and a parent of a child affected by JM it is important to me to know my donations and those I ask of my friends and family are going to be spent in the best way. The Cure JM Foundation leadership provides complete transparency and decisions are thoughtfully made where each dollar is spent. I am able to donate and ask others to support Cur JM with complete pride and confidence it is making a difference in the lives of these children.

Attended the 2016 CureJM National Conference and it was awesome. It was the first time my 6 year old JM child has ever me someone with the same disease. There were so many opportunities for medial updates and questions - completely invaluable. I came hope feeling validated and with direction as to what changes we needed to make in regards to her medical care. So thankful for this organization!!

Our journey started just over seventeen years ago when our daughter was diagnosed with Juvenile Dermatomyositis at the age of two. For many years we struggled with very little information. When we first were introduced to the Cure JM foundation I felt like someone finally understood what we were going through and we had a support system. Since that day there has never been a time that we needed something they have not been helpful and supportive. This organization has one goal and they are doing everything in their power to find a cure for JM so no other child has to go through what our daughter and so many other children have gone through. There is no doubt in my mind that we would not have received best possible care for our daughter without the support of the Cure JM Foundation.

Cure JM is a fantastic non-profit that focuses on patients, without pricy overhead, therefore passing along a maximum percentage of donations to finding a cure and patient care.

Have always been impressed by the CureJM family. Will continue to support and gladly so.

Without the Cure JM Foundation I don't know how we would have gotten through the first year after my grandson was diagnosed with Juvenile Dermatomyositis. The support we received was beyond anything I expected. Now that my grandson is in remission I am more than happy to help families that are dealing with this disease and all that goes along with the diagnosis. Cure JM does so much for families with JM by supporting us and raising funds for much needed research. Meeting some of the families at the annual conference was so good for both my grandson and I. I really appreciate all they do for us and all the other families.

Cure JM has been a lifesaver for my daughter and myself since the diagnosis of my granddaughter a little over two years ago. Hearing that she had juvenile dermatomyositis was confusing and frightening and Cure JM helped us with lots of information as well as a book. We have made lots of connections and helped raise funds for Cure JM, alongside many other families in the same situations. The conferences are a great place to connect and learn more. I am continually impressed with the determination and heart of Cure JM and the research that is being funded for a cure. I support this organization wholeheartedly and will not stop until we Find A Cure!!

Cure JM has been a lifesaver for our family. It's the only organization raising funds & awareness for research and offering support to families. Cure JM is an amazing group of family and friends working together for one goal, one dream- a cure for juvenile Myositis.

Cure jm has been a huge support system for my family, specifically my sister. I am very thankful to have been welcomed into such a great organization.

It’s not easy to find the starting point in a grandparents relationship with Juvenile Dermatomyositis. Emotions overcome rational thinking at times. You could say it was a family affair but not entirely. Our wonderful grandson Parker, while playing touch football, came off the field and said “I just can't go on.” My reaction was sure you can. But it was much bigger than that.

My daughter went home, took Parker to a doctor and, subsequently to many doctors, to figure out what the problem was. The final diagnoses was Juvenile Dermatomyositis. Could barely pronounce it. No known cure. Ultimately, a cocktail of meds was the only curative approach. An experimental brew of meds. Couldn’t find anything to read on the subject. Everyone was flying blind. Hospital/Dr visits were endless and the uncertainty was palpable. And Parker was the test tube.

Solutions tend to emerge when families become inquisitive and creative. Parker’s brothers went the lemonade stand route to raise funds. Lots of brotherly love.  Mom and Dad, along with a few others similarly affected, decided to raise the stakes and do something more meaningful. It was a race against time in saving lives.  

What emerged was a intense effort to educate and inform, find others similarly affected and seek improved care and remedies. It’s now been twelve years. Many speed bumps. Success and failure. But there is now a Cure JM Foundation which has created a national support organization, published a book on JM, financed/conducted research, hosted conferences for medical staff and families and, raised $8 MM to fund research.

The outcome has been a stronger sense of determination to help families deal with a difficult, life threatening medical situation. So if the football analogy holds, were at halftime. A significant effort is still needed to close this out successfully. 

Attitude, knowledge, research and fund raising will be the difference makers in the years ahead. Cure JM has all of this. They will succeed.

When my son was diagnosed with Juvenile Myositis we were scared and felt alone. My son's doctor told us about Cure JM. We joined hoping to learn something about this disease, but we gained so much more than we thought we would -- we gained knowledge, support and hope.

Cure JM sent us educational materials -- a book, brochures and a welcome kit -- and it was everything we needed. We learned about the disease and how to support and take care of our son. The Cure JM Message Board and Family Support Network rallied behind us to answer our questions, support us and just listen when we needed to talk. And most importantly, Cure JM helped my son to meet another child with JM in our area. Having a friend to talk to who knows what he is going through has helped him so much.

I can't imagine fighting this disease without Cure JM and their support.

There are two great thins that Cure JM brings: a wealth of information when you are most feeling lost, as was our case after our daughter was diagnosed with JDM last year. Cure JM has does an outstanding job of getting the right information into your hands quickly, and making you feel welcome and supported. The second great value is fundraising for a disease for which so much is still unknown. The research they support is critical to further understanding of the disease and to improve the odds of our children having full and normal lives.

From the very beginning of my child's diagnosis, the CureJM Foundation has been a part of our lives. I was referred to them by another mom that I had found on Facebook in a support group. The website is very informational and the staff is amazing. They quickly respond to inquires, emails, calls, etc. I decided to host a fundraiser for the foundation in honor of my daughter and they have been beyond supportive of me. I love this organization!

This disease is rare, very rare, and is very difficult to go trough this alone. The uncertainty and the hopelessness is intolerable. CureJM has helped us to connect and share experiences with other families and to dissipate the hopelessness and uncertainty.

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.

When my daughter was diagnosed with juvenile dermatomyositis, we were alone. There was no social media related to this, nor any groups. When we stumbled onto CureJM we were thrilled. there were others with this disease and they were able to give us reliable and easy to understand information as well as connect us to others. We are so grateful to them!

Like a ship being tossed on a stormy raging sea, describes how my family and I felt when our young daughter was 1st diagnosed with JM. We were so fortunate to connect with Cure JM shortly after her diagnoses. Cure JM instantly became a part of our extended family and they immediately provided the overwhelming support and resources that we desperately needed at that time. We have the deepest and most sincere admiration for this great nonprofit organization. Still today we see and feel the support and dedication of all the volunteers who serve not only on the board but throughout the organization. Everyone involved with Cure JM strives in their own personal ways along with collaborative efforts to find the ultimate cure for JM. I am humbled and honored to serve on the board. Cure JM is not just a board it's a large tenacious group of concerned caring people who love and support each other and their families who are all involved in doing what ever it takes to make sure no child has to suffer from JM and their ultimate goal is to truly reach a CURE for JM!!!

CureJM has kept me sane and carried me through many rough times. I don't know what I would do without the great people who keep it together.

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!

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.

Cure JM has been very supportive when my son past away a year go. With me doing a Benefit to help Cure JM awareness and help find a cure, they have been very helpful and supportive.

The Cure JM Foundation has been so helpful, beyond measure. They open the doors of hope and help to anyone affected by this terrible disease, Juvenile Dermatomyositis. Bless them all.

My daughter has been diagnosed with JDM for 7 years now and I have often found peace and reprieve in the CureJM site and family. This site is completely dedicated to support of families and those effected by the disease. This is where we all come together and try to cope with this poorly known/understood/researched disease.

My daughter was diagnosed with Juvenile Dermatomyositis 4 years ago. We were so overwhelmed initially. There wasn't a lot of information out there on this rare disease...until we found Cure JM Foundation! We found answers, friends, and support. This is a great group run with a lot of heart.

I was lost until I found CureJm. My daughter was diagnosed 2 years ago. We didn't know anyone else with this rare disease. We found Cure JM, and got connected with other Texas families. I am forever grateful not only do we now have friends we have forever support and new family members. Thank you Cure JM. The Myositis and You book has been our road map to recovery

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.

Cure JM Foundation is a critical hub for all things related to this debilitating condition. The founders Tom and Shari Hume, have been incredible advocates and organizers, bringing a global JM community together and making a difference. Through their fundraising efforts they have also raised important dollars to help fund a treatment and hopefully a cure.

A foundation that gives families hope, knowledge, and love when a JM diagnosis turns your life upside down. I don't know what I would of done after my daughter was dx last year if it wasn't for this foundation. I was lost, and I am so thankful I had somewhere to turn.

My daughter was diagnosed with Juvenile Dermatomyositis in 2010. I searched for information, but the only real information that I found was on Cure JM's web site. After a while I discovered that they are the ONLY organization that is searching for a cure specifically for the juvenile population. This non-profit is run by people that have ALL been affected by this disease. They are not just looking for money- they are truly searching for a cure. Their proceeds from their fundraisers go directly to the doctor's that are researching. Not to mention their Facebook private group for family members and people suffering have helped to draw the community closer and further educate the affected population. This non-profit has been a Godsend for us and so many others!

My daughter was diagnosed on October 28, 2011 and the hospital told me that she had Juvenile Dermatomyositis. When I asked what it was the doctor told me there wasn't a lot of information out there to go home and look it up on the internet and I walked out of the hospital scared to death. I went home and looked it up and found Cure JM and have been with them ever since. They have taught me so much and through their community of moms, dads, grandparents, caregivers and family members we have helped each other get through really tough times. Cure JM really does wonderful things for research to help our children get 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++.

It was last year that I first heard of Juvenile Dermatomyositis (JDM) when the dermatologist we saw for my daughter’s odd rash (only on her joints) made the initial diagnoses. In my research, I came upon CureJm site, read every site page, read every forum and overnighted the “Myositis and You” book. When we met with the rheumatologist I had a list of questions in hand, my medical binder (recommended by CureJm) ready, and an expectation of the treatment we would be given. If they had said anything different I had a plan B to reach out to JDM specialists recommended from the CureJM community. The knowledge I gained gave me the strength and focus that I needed, and our family needed, in such an overwhelming situation. Within 2 months of her rash showing she started treatment. Perhaps part of the cure is early detection. I know my daughter is in a much better place now because she got the treatment she needed fast, by luck and by being educated with the wealth of information that CureJM provided, and for this I am forever thankful to CureJM.

The Cure JM foundation is doing great work to provide information to those who are facing this disease. They are also doing a lot to raise awareness, and improve and increase research for this disease. Being diagnosed with JM or JDM changes your life in many ways, the Cure JM Foundation has helped us cope with these changes.

Now that Cure JM is coming up to their 10th anniversary, I am delighted to see that they have not wavered in funding research, educating families and the medical profession and raising awareness. I wish I could give them 10 stars instead of 5. They deserve it.

The Cure JM Foundation was our life line when faced with this rare, misunderstood disease. From the first time the Cure JM Foundation reached out to us, we knew they were a special group of people. What we didn't know was that over the next three years they would become our second family. We would not be where we are today without the support of the dedicated families of the Cure JM Foundation.

My daughter was diagnosed with JDM over 11 years ago. There was very little information available as it is so rare. I felt so alone before I found the Cure JM foundation. I have had so many questions answered and shared concerns and fears. We are in the UK but I feel we have a whole new JM family in the US thanks to Cure JM. T

My daughter was diagnosed in 2005 with JDM and this was our very 1st conference. It was more than I could of dreamed of. Meeting all the families and the wonderful Doctors was such a positive experience. I am so greatful for this group and I don't know where we would be without their support! Thank You CURE JM for always being there as a support system for my family! We are looking forward to the next conference!!!

I cannot imagine being a part of an organization which has more direct impact on its mission, than Cure JM. All Board Members are actively involved in raising awareness and funds for a cure. We work diligently to make sure all our support is transparent and that all our funds go to awareness and research for a cure. This is the only organization devoted solely to this rare disease, Juvenile Myositis. Our son, 25, was diagnosed at age 11. Today he is in remission. All JM children aren't as lucky. They often aren't diagnosed properly or readily or treated as aggressively as this disease requires. Cure JM's goals also include educating the scientific community so children can be diagnosed and treated immediately. We reach out to the JM community to help with awareness, to support more research and ultimately to find a cure.

My niece was diagnosed with this incurable auto immune disease at age 2 1/2. I wanted to do anything possible to make her better and not see her suffer. Her parents found this wonderful organization full of dedicated individuals (all volunteers!) to support them while providing a resource of information, outreach and hope. I immediately started to volunteer and fund raise for their national events. Through these events, I have witnessed the special work done by this Organization, the true impact it has made for afflicted families and children and the respect Cure JM Foundation's work has earned in the medical community. Today as a Board member I am honored to be part of the team raising awareness and working towards finding a cure.

My name is Casey Dean and I am on the family outreach advisory for CureJM.org. I found this amazing place in a desperate search to find out more about my son's rare disease. This is the ONLY organization dedicated to helping families who have been devastated by this horrible disease. My son, Hunter, was diagnosed in 2009 with Juvenile Dermatomyositis. Our comfortable, perfect little world was turned upside down. Nobody could tell us what was going to happen or how our lives would change forever. When I found CureJM, the members reached out to me and made me aware of things my Doctor couldn't even tell me. Finding CureJM gave my family and I a sense of peace and understanding. I became a part of this organization as quickly as I could to help them spread information about this disease. Family members who have been touched by this disease solely run this organization. We are all in the same boat in this crazy storm. Our hope is to get enough funding for research and find a cure. Sincerely, Casey Dean - Portland, Texas - deaners4@gmail.com

My daughter was diagnosed in 2004. She was one of the lucky ones as we received a diagnosis within 1 week of her severe symptoms. As a health care professional, it was easier for me to navigate the medical system, thus seeking a 2nd opinion and treatment with one of the leading experts in juvenile myositis (JM). Within months, I became aware of The Cure JM Foundation and began to volunteer. I was moved to action knowing that Cure JM was led by volunteers with the mission of raising funds to support JM research, with almost all monies going to research. We fund 2 centers of excellence in JM Research and have awarded several grants to individuals/institutions studying various aspects of JM. We continue to offer support and educate the public about JM. In addition, we have organized and sponsored free conferences for the medical community led by the leading experts in the field in hopes of providing cutting edge knowledge to those most likely to treat our children with this rare disease. Please consider supporting our cause.

Our daughter was diagnosed in 2002 at the age of 2 1/2 years old. There was limited information in print and online about Juvenile Myositis (JM). There was no dedicated organization to provide support or to fund research for JM. The day our family left the doctor's office after the initial diagnosis, we left with a medical journal article which consisted of about only 8 sentences and indicating a mortality rate of 30%. We were devastated. THAT WAS THEN. THIS IS NOW. Cure JM has funded a 466 page book called "Myositis and You" with updated treatment and and research information for families and medical professionals. By the way, the mortality rate now is actually less than 1%. Cure JM provides regional support reps to help support other JM families. The organization has a very active online JM family network and conducts annual educational conferences for the medical community and for JM families. Cure JM has raised over $3 million dollars for research. Cure JM is led by VOLUNTEERS, so nearly every dollar raised goes to research. Cure JM is a network of passionate and professional leaders (over 25 volunteers) putting their personal talents to work to help ensure kids with this disease can someday have remission and ultimately we find a cure for all kids. I am proud to put leadership talents to work in leading the Cure JM organization. While we have accomplished so much, there is a lot more to do to ensure children both today and in the future do not need to suffer from this disease. Please consider supporting our efforts.

My daughter was diagnosed with Juvenile Dermatomyositis four years ago. Getting this diagnosis was frightening to say the least. I was so fortunate to have found CureJM. Within one day of registering my daughter and her diagnosis on the CureJM web site, I was contacted by another mom facing the same circumstances. CureJM provided comfort, information, and a constructive path forward to find a cure for this devastating and rare disease. I will forever be indebted and I will continue to volunteer and fight until no child suffers with this rare and incurable illness.

When our daughter was diagnosed with juvenile dermatomyositis in 2009 we were at a point in our lives that we didn't know what to believe about this disease. Her doctor and staff gave us the web site to Cure JM Foundation. The Cure JM foundation has been very informative with info and encouraging. The Foundation has helped my daughter see she is not alone in the and through CJMF we have talked with others going through some of the same difficulties. Not to mention the Love and support . We made a page for our daughter to help Cure JM Foundation spreed the word about this disease. These kids deserve a cure!!

Cure Jm has been an wonderful tool in dealing with my daughter's disease! The site is easy to browse and there is a incredible amount of support and information to be found there!

Cure JM Foundation was the first place we turned when our daughter was diagnosed with juvenile myositis. We have received both education and support from Cure JM. The Myositis and You book that Cure JM helped publish was so helpful at the beginning answering many of our questions. Also, we learned about the clinical research doctors who had the most expertise in JM, and our daughter began seeing one of those doctors who has been instrumental in getting her to her current state - virtually symptom free. After participating in a national conference, we joined the board, and we have been happy to support this all volunteer organization as it continues to work towards a cure.

When my son was diagnosed with JDM I was so alone and terrified of what the future would hold for our family. I found CureJM after searching the Internet for answers. I was amazed at the wealth of knowledge And support CureJM offered me. After attending the annual conference I knew I had to get more involved with this group of amazing families. I am honored to serve on the CureJM Board with men and women who I consider my family. CureJM has changed my life and I thank God everyday that it was founded.

Cure JM Foundation has been there to support us from the very day my daughter was diagnosed with Juvenile Dermatomyositis. I emailed each member of their board from the website about who the top doctors were and how to get in touch with them. I had responses back in no time at all. They also let me know about their free educational conference that was coming up in 3 weeks from that day. WIthout these wonderful people and this amazing group of volunteers we would not be where we are today with our daughter! Great people all in the same shoes. It is ran by the very parents that are dealing with the same disease and have been in your shoes! They support research from very caring and compassionate doctors. It is more like a family of everyone who becomes involved. It is more than just a foundation who wants your money, who is not in your shoes, who is going to pay their own salaries. This is a group of people who are doing everything they can to try and save lives!

My son was diagnosed with JDM in 2009 at the age of two. The Cure JM Foundation was my flash light in a pitch dark tunnel. The foundation has taken this devastating part of my life and turned into something very much bearable. If it wasn't for Cure JM, my experience with this disease would be much different. I am grateful for the endless information, support, and knowledge I find there. Thanks to there conventions each year, we are able to stay connected to the latest medical information that is out. We are grateful for the rare opportunity to be able to check in with some of the best medical professionals who have dedicated there careers to this disease. These same conventions that are held have also been based around running events. Thanks to Cure JM, I have ran 3 full marathons since my sons diagnosis. Thank you Cure JM for your help and the gift of a positive spin on all this.

This organization helped my child get an early diagnosis - my Google search located their Web page and I actually took the information to my doctor... this most certainly made a difference in my child's quality of life and will hopefully make a difference in her disease outcome.

Cure JM is a fantastic resource for newly diagnosed and those who have been battling Myositis for years. The organization provides research to help find a cure for the disease, and Cure JM also provides incredible support for the families struggling with this disease.From the first day of my daughter's diagnosis when I found Cure JM on the internet until now just over two years later, I cannot even count the times that I have gotten answers, sometimes in the middle of the night, to questions or concerns. Additionally, Cure JM provides resources for my teenaged daughter to help her not feel so alone with a rare disease. Unbelievable organization with fantastic leadership and members!

Our son was diagnosed with JDM in August 2010. It is a very rare and incurable disease. The first few months were a blur as we went from the hospital to drs appointments for treatment. Once we settled into our new routine, I Googled JDM and found the Cure JM site. It has been a god-send. It is filled with information on the disease, personal stories, information on fundraising and a forum where you can post questions to parents who also have children with the disease. Because it is so rare, families are spread across the world. This website makes you feel not so alone in the world.

Wonderful organization that reaches out to support each family who has a child with JM. My nephew Mason recently lost his battle with JM and there is nothing I want more than to continue to work with this wonderful group and continue to fight for a cure. It may not have come in his lifetime but the hope is that enough money will be raised, that the research will continue and a cure will be found so no more families have to lose their beloved child/sibling/grandchild/nephew. So no more children have to be in chronic pain and sickness from this horrible disease. The Cure JM Foundation is an extention of family. Truely wonderful group.

When my daughter was diagnosed with Juvenile Dermatomyositis, we never heard of this rare life threatening disease (or could pronounce it). Contacting Cure JM for vital information and connections with others who children are fighting the same has helped and continues to help us through this journey towards remission. The Volunteer board is willing and always helpful when a question or stressful situation occurs; I rely on their knowledge and appreciate their eagerness to help. My family would be lost (as we only know 7 other families in Canada with this rare disease) and the stress would be so much higher without the support of Cure JM. I thank them for their endless dedication working towards a cure for all the JDM children.

When our daughter was first diagnosed with Juvenile Dermatomyositis her doctor told us about Cure JM. Since we have come in contact with some of the most amazing people and they have all been such a wonderful support system to our daughter and our family. This last year we held a fundraiser to help Cure JM raise money. We want a Cure for our daughter and for all the other kids suffering with this rare disease. I feel that Cure JM is such a wonderful and supportive foundation. They keep us up to date on all new informations about medicines and research and even fundraising events. We are so thankful for this group and are so appreciative of the support we get from them and the people they have put us in touch with.

My daughter was diagnosed in July of 2008 with Juvenile Dermatomyositis. Without Cure JM I don't know if our daughter would be getting the care she needs because we wouldn't have know what needed to be done. JDM is extremely rare and Cure JM has so many helpful links and advice. It is our lifesaver.

Excellent charity for a wonderful but undeserved cause.

Cure JM Foundation is made up of people who really care. We are always provided with encouragement and the latest information and know that they are creating awareness. Plus we caregivers get a chance to participate in various events and that is empowering.

There is so much to be said about an all volunteer based organization. And even more so about its amazing community. It brings us all together as a family. My name is Johana. I am not a jdm patient, nor a am i a doctor. I can say that My family and i are jdm Survivors. Although my little brother didnt. His name : Jose . He fought his battle & won in the sense that he didnt let the illness bring his spirits down. He always saw the good in people and in the life we were given. He is the reason i was so strong. My brother was six when he was diagnosed and he left us at the age of 18. if it werent for the reasearch cure jm funds, we wouldnt have had the privelage of seeing what an amazing young man he turned out to be. Still, the disease took him alot sooner than anyone ever expecta. And although writing about him and his illness is always difficult, I implore to anyone and everyone to please get involved. Help us Spread awareness. Help us find a cure.

We stumbled across the Cure JM foundation online researching symptoms my then 4year some was experiencing. We had been seen by many doctors over the previous 6 months and were getting nowhere while his symptoms were acelorating. The photos and information provided on the site gave us the answers we were looking for!!! It was exactly what had been going on with my son. I took the information that was very well set out and easy to understand to our doctor and demanded a blood test. I was right we got a diagnosis of JDM. We turned back to Cure JM for information and support. We are in Australia where there is nothing set up or no info for patients / families other than what's provided by doctors which is mostly medical jargon that the average joe wouldn't understand. I was greeted warmly and pointed in the direction of the message boards and also given contacts of other families in Australia! Also they have provided us with information for our general practicioner who had never heard of JDM and also for school, along with current sun safety advice. While we are not close enough to get involved in current events hosted by cure JM the distance has made no difference to the wonderful people there who make sure we feel supported, informed and part of a community. Without cure JM, we may not have found a diagnosis for my son. And I would not have been empowered with the knowledge and experience of other parents facing the same challenges. I am forever grateful they are there.

When our daughter was diagnosed with the rare disease of Juvenile Dermatamyositis, we felt completely lost and alone. Then a search of the internet pointed us to CureJM and prayers were answered. This foundation has such a wealth of knowledge and is the only foundation that is working hard to find a cure. It also guided me to other families so that we might support each other in this journey. Thank You CureJM!!!

My daughter has been fighting JDM for more than 8 years without a remission. When she was first properly diagnosed there was hardly any information available to us on her disease and where to go for treatment. Fortunately we heard of Dr. Lauren Pachman at Children's Memorial Hospital in Chicago, IL. Dr. Pachman later informed us of Cure JM and how they are working so hard to get funding for this rare disease and help educate patients and their families of what JDM is all about. Thanks to the hard work and dedication of Cure JM, they were able to be part of the Pepsi Refresh program in 2010 and came in first place for the $250,000 award! I truly feel that because of Cure JM, this horrible disease will start receiving more of the much needed funding it needs to finally find a cure. Thanks to Cure JM, we can obtain information and receive support from other families who have a child fighting JDM. Please support Cure JM - these kids need a fighting chance!

I found Cure JM cause Belgium has no organisation for JM. The support is enormous, the fund raises, someone to talk to, etc.

My daughter is a victim of this horrible disease and the foundation is an amazing resource!

My daughter has juvenile dermatomyositis. The CURE JM foundation has helped ro raise money to raise public awareness and to help doctors find a cure. She is currently much better thanks to CURE JM's efforts and Dr. Pachman.

When my perfectly healthy 15 year old daughter was dx with JDM, I had no clue what to do. When I found this website I was amazed by the information I found on the site. Curejm.org has put me in contact with people who are my soft place to fall apart with. They have connected me with people I now after 10 months consider my family. Caregivers who are there for me more then my own family and friends. I left the website after Emily was dx knowing exactly what I was dealing with. With the information from the site I was armed and ready to take this disease head on.

I am so thankful for CureJM. I am so blessed to be a volunteer and doner to this nonprofit.

The Cure JM Foundation has changed my son and our Families life. I felt so lost when Connor was diagnosed with JM and I was so afraid until CureJm reached out to us with compassion, information and friendships that will last our whole life's. I can not tell you all enough at what a difference they made. Thank You CureJM and all you to to educate and keeping us all motivated to fight for a Cure for our Babies.

A friend of mine was diagnosed with JDM last year. Being able to raise awareness of her disease through this organization has been an amazing opportunity! Cure JM has provided people all across the country chances to fight back. It is most definitely what I consider a cause worthy of recognition!

My 10 year old daughter was diagnosed Nov. 2010 with Juvenile Dermatomyositis. I don't know what we do without the Cure JM Foundation and all of it's wonderful support for those of us dealing with this rare (horrible) disease!

When my daughter was finally diagnosed in Jan. 2007 we'd been searching for over a year for reasons as to why my daughter was falling over, couldn't get up off the floor, walk upstairs or put on her clothes without help. The doctor who did finally made the diagnosis told us about a book called Myositis and You that she'd been part of writing and told us it had just been published. The Cure JM Foundation had instigated its authorship and we were so fortunate to have it at the beginning of our journey with JM. During the past 4.5 years we've gone to several conferences that Cure JM has put on, gotten connected with one of the top research and clinical doctors in the field, and met other families going through our same situation. We are so grateful for all the education, support and active ways of contributing to the search for a cure that Cure JM has given us. For an all volunteer organization they do a wonderfully professional job of managing money, keeping records of all the registrants as well as growing into an internationally recognized organization with professional videos and materials that families turn to when first diagnosed or come back to again and again.

My daughter was diagnosed with juvenile dermatomyositis in 2008. I had little info at that time, much less a good support group. This site has provided me with both. Through the info this site has provided, I have learned more about her disease and have been able to make better informed decisions about her halthcare as a result.

My son has an autoimmune disease (not JM) but we became familiar with the organization after having a hospital roommate with the disease. I have been very impressed by this grassroots organization, and wish that my son's disease had a support and fundraising network like this one. The strides these parents have made is no less than astounding, with serious contributions made to capital campaigns for serious research, networking between the affected children and parents, and providing a knowledge base that rivals some of the more well documented and supported chronic diseases. As a parent with a child who had a related illness, I have also benefited from this knowledge base, as many of the drugs and "tips" are the same. As a volunteer organization, it is well managed, and a labor of love, not burdened by ad campaigns or employee salaries. Your contribution makes a real impact on an underfunded, under-recognized, serious childhood disease here where it is needed most. As an "orphan" disease it receives little to no funding from government or healthcare sources. Supporting cure JM can really make an enormous impact, and for that reason, we are donors and supporters.

Cure JM has been with us for the last 6 years or our daughters diagnosis of JDM. It has allowed us to connect with families going through the same experiences and not feel so alone. They have provided us with valuable information regarding Doctors, Research, Treatments, etc...
We are very fortunate to have this connection and pray it is here for others in the future.

The Cure JM foundation has been an excellent resource for us in finding the necessary doctor to help treat our sons disease. they connected us wuth a doctor in Chicago who has done extensive research to help fight this disease. Without Cure JM we would have never known about this. Our son continues to battle the severe negative effects of this disease but due to Cure JM we have renewed hope that he will get better again.

Cure JM has provided us with knowledge about a very little known illness, juvenile dermatomyositis. Our son, Mason was diagnosed at the age of 17 months and is fighting a continuous battle. Through Cure JM we were given access to leading doctors across the U.S. who could help our child on the road to recovery. Not only have they lent support, guidance, and valuable information, but they have gone out of their way to make us feel special. While in California to attend the Cure JM conference and marathon, our son ended up in the ICU fighting for his life. Founders and members of Cure JM showed exceeding amounts of compassion, caring, and support. Because of Cure JM, our family feels we are not alone. We have a wonderful source for information and meeting families afflicted with the same illness. Cure JM needs donations to fund research to find a cure. Our family has made it a personal mission to help achieve this goal by raising money. One day a cure will be found and no child will have to suffer from this debilitating illness.