Cure Jm Foundation

Rating: 4.97 stars   117 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 eight 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 2,200 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.
2015 Top-Rated Nonprofit
Write a Review

See How $25 Can Help

See How 3Hrs Can Help

More Info

EIN 35-2222262
(760) 487-1079
Invite people to share their experience with this nonprofit!

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

Rating: 5 stars  

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.

 
Flag review
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

 
Flag review
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

 
Flag review