CURE JM FOUNDATION

Rating: 4.96 stars   108 reviews

Issues: Health

Location: 836 Lynwood Dr Encinitas CA 92024 USA

Mission: Cure JM's mission is to provide support for families coping with JM, raise awareness of JM, and fund research that will ultimately lead to a cure.
Results: Thanks to the Juvenile Myositis community, family and friends, Cure JM has: - Raised over $8 Million through grassroots fundraisers throughout the country - Helped establish and continue to fund two JM research centers: one at Ann & Robert H. Lurie Children’s Hospital of Chicago (Cure JM Program of Excellence in JM Research) under the direction of Dr. Lauren Pachman; the other at George Washington University in Washington, D.C. - Helped secure a 4-year grant totaling $1.9 million from NIH in 2010 for the Chicago team due to the progress already underway at the Cure JM Program of Excellence in JM Research - Funded a research study with Duke University and CARRA to determine the best treatment approaches for JM - Funded the first-ever book about JM, "Myositis and You", written by over 100 doctors - Provided seven educational forums where leading JM researchers spoke to families and facilitated four JM educational forums for medical community - Created targeted educational materials (video and welcome kit) for newly diagnosed families - Garnered local and national media attention…at least 500 local newspaper articles and 100 television stories - Connected over 1,500 families in 32 different countries to provide mutual support in their battle against JM – includes having regional JM family support representatives in the U.S. - Created grandparent support and advocacy network - Provided a comprehensive website, and active message board where families can post questions and connect with other families affected by JM - Provided welcome kits, brochures and videos for JM community - Provided guidance to families to help them navigate the health care system and work with insurance companies, doctors, schools... - Engaged with 13,000+ followers in social media community
Target demographics: families and patients dealing with Juvenile Myositis (JM). Including Juvenile Dermatomyositis (JDM) and Juvenile Polymyositis (JPM).
Direct beneficiaries per year: educate and support families coping with Juvenile Myositis; educate medical professionals about JM; fund research studies into causes and best treatments of JM, including helping to fund two JM research centers.
Geographic areas served: across the world
Programs: Cure JM Foundation™ is a 501(c)(3) nonprofit organization dedicated to finding a cure for Juvenile Dermatomyositis (JDM) and Juvenile Polymyositis (JPM), the rare and life-threatening autoimmune diseases collectively known as Juvenile Myositis (JM). Approximately 2 to 4 children in a million in the United States are diagnosed with JM each year. Cure JM's mission is to provide support for families coping with JM, raise awareness of JM, and fund research that will ultimately lead to a cure.
2014 Top-Rated Nonprofit
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EIN 35-2222262
(760) 487-1079
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Community Reviews

Rating: 5 stars  

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!!

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Rating: 5 stars  

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

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.

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1 previous review
Rating: 5 stars  

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

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!

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1 previous review
Rating: 5 stars  

1 person found this review helpful

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.

I've personally experienced the results of this organization in...

They have provided much needed support.

If I had to make changes to this organization, I would...

None

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Rating: 5 stars  

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!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

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Rating: 3 stars  

Cure JM did send a welcome folder for my daughter.

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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

Rating: 5 stars  

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.

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Rating: 5 stars  

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!!!!

If I had to make changes to this organization, I would...

Nothing.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

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.

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Rating: 5 stars  

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.

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