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Cure JM Foundation

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Nonprofit Overview

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 $10 million for research and educational programs. Helped establish 2 research and treatment centers. Provided support to 2,500 patients and family members. Funded the first-ever book solely about JM with contributions from 80 medical professionals. Held 9 family conferences and 6 symposiums for the medical community. Supported over 120 research studies to accelerate progress toward a cure.

Geographic areas served: the United States and worldwide

Programs: 2 research and treatment centers; annual conferences for patients and their families; annual symposiums for the medical community; support groups and educational materials

Community Stories

149 Stories from Volunteers, Donors & Supporters

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

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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.

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.

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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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!

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!

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.

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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.