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Cure JM Foundation

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Nonprofit Overview

Causes: Health, Pediatrics Research

Mission: Cure JM Foundation's mission is to find a cure for Juvenile Myositis and improve the lives of families affected by JM.

Results: Raised $15 million for research and educational programs. Helped establish 4 research and treatment centers. Provided support to 4,000 patients and families. Funded the first-ever book solely about JM with contributions from 80 medical professionals. Held 11 family conferences and 8 symposiums for the medical community. Supported over 175 research studies to accelerate progress toward a cure.

Target demographics: Children with Juvenile Myositis

Direct beneficiaries per year: 4,000 families and patients

Geographic areas served: the United States and worldwide

Programs: 4 research and treatment centers; annual conferences for patients and their families; annual symposiums for the medical community; support groups and educational materials

Community Stories

186 Stories from Volunteers, Donors & Supporters

Holly V.2

General Member of the Public

Rating: 5

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!

Donor

Rating: 5

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

Donor

Rating: 5

Cure JM is doing excellent work pursuing a cure for this mostly unknown disease! Communication has been stellar with updates from the actual research doctors. There is no doubt that donations to this foundation are being used efficiently towards the goal.

Donor

Rating: 5

In the late spring of 2012 my daughter noticed my granddaughter, age 5, had become lethargic, and complained of her legs hurting. It took several weeks of research by my daughter working with her pediatrician to determine a preliminary diagnosis. Brynn was examined by a local Rheumatologist, diagnosed with Juvenile Dermatomyositis JDM. She was in critical condition, and admitted to the hospital for aggressive treatment with powerful drugs. We had never heard of this disease before. During her 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.

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 solidified our support and appreciation for the Cure JM Foundation.

My granddaughter is now 13, and doing very well. However, JDM could raise its ugly head again any time. Since I was introduced to the Cure JM Foundation 8 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. 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 effective. It is efficiently run by its dedicated staff and volunteers who work tirelessly to find better treatments for their kids.

General Member of the Public

Rating: 5

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.

Client Served

Rating: 5

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.

Sue C

Client Served

Rating: 5

My daughter was diagnosed with JM at 16 yrs old, in the middle of her teen years. So much was taken away, she was unable to participate in high school sports, she spent thousands of hours in the hospital with tests and treatment, she was too tired or feel too sick to be able to socially participate with her peers. Cure JM is the only group to be solely focused on a Cure for my daughter and all with JM!

Previous Stories

Volunteer

Rating: 5

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!

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Rebecca Priest K.

Donor

Rating: 5

CURE JM is awesome! Right away after our daughter was diagnosed we got connected to other parents and to physicians that specialize in her rare disease. We didn’t feel alone anymore in our journey. They raise money for the much needed research ultimately getting medicine approved that our kiddos desperately need. We are happy to donate as we know exactly where the money goes.

Denise_K

Volunteer

Rating: 5

I have volunteered at Cure JM for several years now and I continue to marvel at their conviction to finding better treatments and a cure for Juvenile Myositis diseases. Every penny matters. I will continue to support Cure JM through donations and volunteer hours. -Denise Koch

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Volunteer

Rating: 5

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.

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Volunteer

Rating: 5

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!

KarB

Volunteer

Rating: 5

Cure JM is a remarkably professional nonprofit, highly dedicated to serving families of children with juvenile myositis (JM). The executive director has many years of experience as a nonprofit professional. The staff are experienced and passionate about their cause. Cure JM is a strategically and financially disciplined organization with a very involved Board of Directors from across the country.
I have worked with Cure JM for four years, most recently as Chair of the Chicago & Midwest Fundraising Walk in 2019 and Co-Chair of the national, virtual fundraising walk in 2020. Cure JM is highly driven to raise awareness for juvenile myositis, reduce time from onset to diagnosis, provide support to JM families and fund research to improve treatments and find a cure for JM.

Previous Stories

Volunteer

Rating: 5

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.

Board Member

Rating: 5

I have been involved with Cure JM Foundation for 12 years. I sit on the board and research committee. I have been on numerous other boards and never have I seen such a dedicated and conscientious group of people. When I started we were all volunteer driven. Now we have 4-5 staff people and continue to raise money to support research and education in addition to those salaries. We are diligent with protecting and stewarding the money we raise because most of it comes from our JM families and their friends. Everyone wants better treatments and a cure and we've moved the needle in that regard in the past 15 years that this organization has been in existence. It used to be that that time from onset of symptoms to diagnosis was 9 months to a year. We now know that most kids are diagnosed within the first 3 months of their symptoms. We have an international database that comprises 3000+ families and many doctors now refer their patients to us and our website for information. When I started with Cure JM there was only one center of excellence in the US. Now there are 4, spread out geographically. We are the only organization focusing solely on Juvenile Myositis care and research.

Sarah M.17

Volunteer

Rating: 5

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.

General Member of the Public

Rating: 5

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!

Volunteer

Rating: 5

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!

1 Suzy C.

Client Served

Rating: 5

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.

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2

Client Served

Rating: 5

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.

Christy P.2

Client Served

Rating: 5

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.

Donor

Rating: 5

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.

Client Served

Rating: 5

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.

Sissy T.

Client Served

Rating: 5

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!

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2

Client Served

Rating: 5

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!

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GtBokster

Volunteer

Rating: 5

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.

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1

Volunteer

Rating: 5

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!

Client Served

Rating: 5

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.

Volunteer

Rating: 5

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!

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Volunteer

Rating: 5

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.

Volunteer

Rating: 5

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!

Volunteer

Rating: 5

Because of support from the Cure JM Foundation, children living with JM can access medical care at three Centers of Excellence!

Lisa Selvaggio F.

Volunteer

Rating: 5

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.

John K.2

Client Served

Rating: 5

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 :).

April D.3

Client Served

Rating: 5

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.

Donor

Rating: 5

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.

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Donor

Rating: 5

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.

Client Served

Rating: 5

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!

Client Served

Rating: 5

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.

Donor

Rating: 5

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

Donor

Rating: 5

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

Previous Stories

Volunteer

Rating: 5

Cure JM is a wonderful organization dedicated to finding a cure for Juvenile Myositis. I am proud to raise awareness and funds for these children. Over 91% of all donations go directly to research to find a cure.

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Volunteer

Rating: 5

My daughter was diagnosed with JPM in 2006. When you are told your daughter has a very rare autoimmune disease in which her body is working against itself, it is overwhelming. By the time of diagnosis, my daughter could barely walk, was in constant pain, and suffered from continual fatigue. JPM had taken so much away from her. The treatment was very aggressive, the drugs laden with side effects, and recovery was slow. A volunteer from Cure JM was often at clinic and she introduced us to organization. The support that Cure JM offers families is tremendous. Yes, the disease is rare and each case is very unique but we are not alone. Cure JM provides a community for families dealing with JM diseases. Above all of this, Cure JM and it's families raise funds to pay for medical research. This is key to finding better treatments, finding the cause, learning prevention, and someday finding a cure. I have chosen to join all of the other volunteers with Cure JM and dedicate my time to offering family support and helping to raise funds.

Beth196

Donor

Rating: 5

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.

Ashley148

General Member of the Public

Rating: 5

Since my daughter was diagnosed 4 years ago we have struggled with fitting in. Being at the conferences and having the support CureJM gives us has been so amazing for us as parents and our daughter! I couldn't have asked for a better organization. Especially since we were able to travel to D.C. To see a specialist!!!

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2

Client Served

Rating: 5

What an am amazing group. We went to the conference and my daughter met other girls and boys like her. She has made friends for life from all over the world!! I hope one day we are able to find a cure!!!

1 CarolS-R

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

Most people find Cure JM when a child in their family gets sick. Cure JM can then provide invaluable support and information. Ultimately, Cure JM's goal is exactly what their name spells out- the best hope of finding a cure for the children with JM. I am so deeply and genuinely grateful for the wonderful people who make this organization what it is, truly exceptional!

2

Client Served

Rating: 5

Our son was diagnosed three years ago at the age of 7 with Juvenile Dermatomyositis. His diagnosis affects one in a million boys. We felt completely isolated. Then we joined Cure JM. This outstanding organization provided us with the knowledge, tools, and advice to make sure our son was getting the best treatment possible for this rare disease. The experts and research centers supported by Cure JM are an invaluable resource to our children and our family. Cure JM has connected us with many JM families which have provided us with support and encouragement about the battles we fight on a daily basis. Cure JM is almost solely volunteer driven by those families affected by Juvenile Dermatomyositis. These volunteers are extremely passionate about this organization, as well as fundraising with the common goal of finding a cure for Juvenile Myositis.

1 Marissa15

Client Served

Rating: 5

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!

Mira M.

Client Served

Rating: 5

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 !!

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

Previous Stories

Client Served

Rating: 5

CureJM is a wonderful charity. Not only do they raise money to find a cure for this rare disease, but they also provide ongoing support through suggestions, connections to other families, and information on current research and activities. They provide support to families that goes well beyond fundraising.

Client Served

Rating: 5

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!

Colleen75

Client Served

Rating: 5

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!!!

2

Client Served

Rating: 5

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.

1 Jill M.

Donor

Rating: 5

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!!

Previous Stories

Volunteer

Rating: 5

I have been involved with Cure JM for about 10 years or so in one way or another. I was on the board for a year or two and enjoyed that role. I am currently a Family Support Network volunteer. Cure JM has offered tons of information on JM and helped in countless ways to find a cure for this disease.

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Client Served

Rating: 5

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.

Board Member

Rating: 5

Our family has been so blessed by the Cure JM organization. The minute our daughter was diagnosed, we were able to find the foundation and get the support that we need. The foundation has funded many critical research studies, they are committed to helping JM kids and families have a better quality of life and they continue to grow as an organization.
We are so thankful to be affiliated with a group that cares about our child and our family.

Client Served

Rating: 5

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!

1 Brianna15

Client Served

Rating: 5

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.

Julie U.

Volunteer

Rating: 5

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.

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Advisor

Rating: 5

I am a client, served (parent), volunteer, and advisory board member. Every part of this organization is amazing as it is run by the most wonderful people!

2 mczero

Client Served

Rating: 5

Nearly 10 years ago, we began noticing a rash on my son's hands. 8 months later he lost control of his bowels. Then he couldn't walk over the sand dune onto the beach. It took over 18 months to find a diagnosis and help for my boy. He has juvenile dermatomyositis (JDM).

Today, the average time to diagnosis is 6 months, with many kids finding a diagnosis much sooner. Much of this is because of the efforts of CureJM.

After diagnosis, we walked my son's JDM path alone. We finally connected with CureJM four years into the journey. Then we finally met another family with JDM.

I have learned so much from CureJM. First hand knowledge from parents fighting our same battle has been invaluable. Attending conferences with physicians specializing in JDM ha left me with more knowledge and great questions to ask our treating physician.

In addition, CureJM supports two Juvenile Myositis clinics. My son has made multiple visits to one of them and now, an expert in JDM consults regularly in his care.

To say CureJM has made a difference in our family would be an understatement. I cannot even imagine the past four years without the resources CureJM provides. We are forever grateful.

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2

Client Served

Rating: 5

We are so grateful to CureJM. My son was diagnosed with juvenile dermatomyositis nearly 8 years ago. Unfortunately, we were only peripherally aware of CureJM until four years ago when a member of the board convinced me to become involved. Nonetheless, we benefitted from CureJM funded research and joined in a research study recommended by CureJM. That study led to a longstanding relationship with a top researcher in my son's disease. We have seen her for consultations multiple times over the years, even as recently as May. Her commitment to finding a cure and improving outcomes has been pivotal for my son and so many others. CureJM made this happen.

During the past four years, the relationships I have built via CureJM have been a lifeline for me. I have learned so much about my son's illness and how to help him. I have received guidance and support. My son and I, our family as a whole, no longer walk this path alone. Instead, we are part of a community where we laugh, cry, learn and advocate together.

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1

General Member of the Public

Rating: 5

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!!

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1

Volunteer

Rating: 5

CureJM brought us HOPE during the scariest time in our lives, JDM diagnosis. Attending a conference was THE BEST decision I made. It instantly connected me with other families that unserstood exactly what we were going through. More importantly, I walked away armed with valuable information that helped me make more informed decisions regarding my daughters care. It allows me to breathe knowing that we have determined smart parents and researchers fighting for a cure. Thank God for CurejM!!

1

Volunteer

Rating: 5

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.

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1

Volunteer

Rating: 5

My daughter was diagnosed in 1997, at that time there was little to no information to help parents of newly diagnosed children.

From the moment I made contact with Cure JM, they have made us feel like family members and have been with us every step of the way.

No concern is too big or too small, anytime I have had a question someone has been there to help.

We were given the names of two specialists that have ultimately helped turn our daughter's disease around.

1

Donor

Rating: 5

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.

1

Donor

Rating: 5

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

3 Susan M.

Volunteer

Rating: 5

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.

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1

Volunteer

Rating: 5

Since my grandson was first diagnosed 6 years ago the Cure JM Foundation has been my rock. They are always willing to help answer questions, give advice, comfort, support and rejoice the good times. Besides being a wonderful support group for families affected by JM they do everything they can to help raise awareness and research funds to help find a cure for our kids.
I have had the opportunity to attend a Cure JM Conference and learn more about this rare disease, not only from other parents going through the same thing but, from some of the leading specialists in treating and researching this disease. Cure JM funds this research so that doctor's can more easily recognize Juvenile Myositis so that our kids will get a quicker diagnosis, which is critical for a good outcome. They are also researching to find better treatments and one day a cure. Cure JM is the only foundation in the States helping parents and trying to find a cure!!! Without them I don't know how I would have gotten through the diagnosis of this disease and the last 6 years.

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1

Donor

Rating: 5

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!!

1

Volunteer

Rating: 5

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.

1

Client Served

Rating: 5

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.

Advisor

Rating: 5

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.

JMdad

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.