CURE JM FOUNDATION

Rating: 4.96 stars   107 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  

1 person found this review helpful

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

Will you volunteer or donate to this organization beyond what is required of advisors?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

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!

Will you volunteer or donate to this organization beyond what is required of advisors?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful?