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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

47 Stories from Volunteers, Donors & Supporters

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.

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!

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.

Previous Stories

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!

1 Sue C

Client Served

Rating: 5

Being diagnosed with a rare autoimmune disease we felt so alone until we found CureJM! This amazing group of families gave us hope and support! Finding a cure is the one mission and shared by all families and CureJM will make our dream come true!

Previous Stories
1

Volunteer

Rating: 5

CureJM is a one of a kind organization made up entirely of parents and families of kids with JM. The support I have been personally given has helped me through the last several years in fighting this incurable disease. CureJM not only raises awareness, supports families and especially parents, but raise money to fund research for the cure I believe they will ultimately be responsible for. To now be able to give back by being a parent volunteer to this incredible organization and group of parents is amazing!

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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.

Previous Stories
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.

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.

Previous Stories
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

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.

Cesar D.

Volunteer

Rating: 5

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.

Volunteer

Rating: 5

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.

Previous Stories
1

Volunteer

Rating: 5

My grandson was diagnosed with Juvenile Dermatomyositis nearly five years ago. There was so little information out there of this rare disease! When my daughter found CureJM the door opened to information for us. Since educating ourselves and seeking proper medical treatments, we are dedicated to the ideal of CureJM....that we find a cure and that no other child suffers with this rare disease. While there is no cure yet, CureJm works to fund research for better treatments, that elusive cure and to help being awareness to the public and the general medical field so that earlier diagnosis is possible. CureJM has become family.

Volunteer

Rating: 5

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!

Previous Stories
1

Client Served

Rating: 5

My son was diagnosed just shy of 2 years ago w/ JDM. When he was dx I had never heard of this disease. I found the curejm website and cannot express how grateful I am. The people on the board as well as other parents dealing w/ this have helped me through a very rough time in our lives. If it was just to let me vent for a moment to someone who understands or to answer quetions that I couldnt find the answers to, there is always some one there. There is no cure YET, But I feel that through the curejm foundation and the parents who volunteer there will be some day soon.

Kristinepa

Volunteer

Rating: 5

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!

Volunteer

Rating: 3

Cure JM did send a welcome folder for my daughter.

Comments ( 1 )

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ShannonMalloy 04/16/2014

momof2girls1boy, I am personally saddened that your experience with Cure JM was not as good as it could have been. Providing support for families coping with Juvenile Myositis has always been a cornerstone of Cure JM’s mission statement. If there is something that we can do to improve we want to know about it so we can fix it. I hope that you will reach out soon, my email is below. Wishing you all the best, Shannon Shannon.Malloy@curejm.org

Volunteer

Rating: 5

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.

Volunteer

Rating: 5

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!!!!

Volunteer

Rating: 5

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.

Erin62

Volunteer

Rating: 5

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.

Volunteer

Rating: 5

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++.

1

Volunteer

Rating: 5

This past weekend, I attended my first Cure JM Conference. I went there, wanting to learn as much as I could about JDM so I could help find a cure for my 6 year old grandson Kinser who was diagnosed in August of 2010. I wanted medical information, anything that I use to help him and the other children with this disease. To be honest, most of the medical information was so far over my head that I had a hard time grasping the information presented. Then, I realized the real reason I was there. It was for support, the kind you get when you realize that there is a "community/family" out there for you. To help you cope. To give you strength. To give you courage to fight against something that has no boundries or feelings like you do. The entire time I spent time with the Cure JM Foundation family, I felt courage coming from each and everyone of those in attendence. This could only have been accomplished if the Foundation existed, without them, we would be standing alone. That is something no family should ever feel when dealing with an Orphan Disease. The Cure JM Foundation deserves to be recognized for this award because they exist for the families to have hope.