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
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EIN 35-2222262
(760) 487-1079
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Community Reviews

Rating: 5 stars  

My daughter was diagnosed on October 28, 2011 and the hospital told me that she had Juvenile Dermatomyositis. When I asked what it was the doctor told me there wasn't a lot of information out there to go home and look it up on the internet and I walked out of the hospital scared to death. I went home and looked it up and found Cure JM and have been with them ever since. They have taught me so much and through their community of moms, dads, grandparents, caregivers and family members we have helped each other get through really tough times. Cure JM really does wonderful things for research to help our children get a CURE.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

 
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Rating: 3 stars  

When our daughter was diagnosed with juvenile dermatomyositis in 2009 we were at a point in our lives that we didn't know what to believe about this disease. Her doctor and staff gave us the web site to Cure JM Foundation. The Cure JM foundation has been very informative with info and encouraging. The Foundation has helped my daughter see she is not alone in the and through CJMF we have talked with others going through some of the same difficulties. Not to mention the Love and support . We made a page for our daughter to help Cure JM Foundation spreed the word about this disease. These kids deserve a cure!!

Will you volunteer or donate to this organization?

Definitely

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

A lot

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

When our daughter was first diagnosed with Juvenile Dermatomyositis her doctor told us about Cure JM. Since we have come in contact with some of the most amazing people and they have all been such a wonderful support system to our daughter and our family. This last year we held a fundraiser to help Cure JM raise money. We want a Cure for our daughter and for all the other kids suffering with this rare disease. I feel that Cure JM is such a wonderful and supportive foundation. They keep us up to date on all new informations about medicines and research and even fundraising events. We are so thankful for this group and are so appreciative of the support we get from them and the people they have put us in touch with.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2011

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

Our daughter was diagnosed when she was 3 years old. She is now 9. After months of being so overwhelmed we came across the Cure JM foundation. We were sent a welcome pack immediately with some bracelets and some other family and patient support information. Our daughter loved a part on their website with pictures of other children also with the disease. It has really helped her feel like she isn't the only one dealing with Dermatomyositis. We are so thankful for Cure JM. Jay and Julie

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

receiving information when we were first diagnosed and not feeling so alone.

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

I think that they are doing a great job in spreading the word about this very rare disease.

 
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Rating: 5 stars  

There is so much to be said about an all volunteer based organization. And even more so about its amazing community. It brings us all together as a family. My name is Johana. I am not a jdm patient, nor a am i a doctor. I can say that My family and i are jdm Survivors. Although my little brother didnt. His name : Jose . He fought his battle & won in the sense that he didnt let the illness bring his spirits down. He always saw the good in people and in the life we were given. He is the reason i was so strong. My brother was six when he was diagnosed and he left us at the age of 18. if it werent for the reasearch cure jm funds, we wouldnt have had the privelage of seeing what an amazing young man he turned out to be. Still, the disease took him alot sooner than anyone ever expecta. And although writing about him and his illness is always difficult, I implore to anyone and everyone to please get involved. Help us Spread awareness. Help us find a cure.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2011

 
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Rating: 5 stars  

We stumbled across the Cure JM foundation online researching symptoms my then 4year some was experiencing. We had been seen by many doctors over the previous 6 months and were getting nowhere while his symptoms were acelorating. The photos and information provided on the site gave us the answers we were looking for!!! It was exactly what had been going on with my son. I took the information that was very well set out and easy to understand to our doctor and demanded a blood test. I was right we got a diagnosis of JDM. We turned back to Cure JM for information and support. We are in Australia where there is nothing set up or no info for patients / families other than what's provided by doctors which is mostly medical jargon that the average joe wouldn't understand. I was greeted warmly and pointed in the direction of the message boards and also given contacts of other families in Australia! Also they have provided us with information for our general practicioner who had never heard of JDM and also for school, along with current sun safety advice. While we are not close enough to get involved in current events hosted by cure JM the distance has made no difference to the wonderful people there who make sure we feel supported, informed and part of a community. Without cure JM, we may not have found a diagnosis for my son. And I would not have been empowered with the knowledge and experience of other parents facing the same challenges. I am forever grateful they are there.

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

Without it, we would not have found a diagnosis for my son. His health would have deteriated dramatically before we found the relivent specialist given the symptoms of this rare disease and the lack of knowledge about it in the medical community.

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

Expand it! Make it bigger and world wide!

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

How did you learn about this organization?

Online searches of medical symptoms

 
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Role: General Member of the Public
Rating: 5 stars  

My daughter has juvenile dermatomyositis. The CURE JM foundation has helped ro raise money to raise public awareness and to help doctors find a cure. She is currently much better thanks to CURE JM's efforts and Dr. Pachman.

Will you volunteer or donate to this organization?

Likely

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

Life-changing

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

My daughter was diagnosed in 2005 with JDM and this was our very 1st conference. It was more than I could of dreamed of. Meeting all the families and the wonderful Doctors was such a positive experience. I am so greatful for this group and I don't know where we would be without their support! Thank You CURE JM for always being there as a support system for my family! We are looking forward to the next conference!!!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

 
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1 previous review
Rating: 5 stars  

Where do I begin? I first have to say that I have no idea where we as a family would be without the Cure JM Foundation. My daughter was diagnosed in January of 2005 at the age of 7 with Dermatomyositis. When we were first told about her condition we were in shock, we didn't know what to do and we certainly couldn't find anyone to talk to about our new diagnoses. It was such a blessing that we found The Cure JM Foundation. We were able to connect to other families that were going through the same thing that we were. Here we are in July 2012 and we are still fighting the fight. There have been days that I thought that I could not go anymore, then I connect with another JM Mom and I am reminded that I am not alone in this fight. There is no way that I could go throught this without the support of the Cure JM Foundation. We have been so inspired by other families that my daughter and I decided that we were going to have a fundraiser for the Cure JM Foundation the month of July. We are not only spreading awareness about Cure JM, but we are helping to raise money to fund research so that no child has to suffer with this very rare disease again. I will forever be greatful to Cure JM for finding all of the amazing people that I have met throught this Foundation. I would never be able to do this without all your support. Thank You. Darlene Rose

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

1 person found this review helpful

A friend of mine was diagnosed with JDM last year. Being able to raise awareness of her disease through this organization has been an amazing opportunity! Cure JM has provided people all across the country chances to fight back. It is most definitely what I consider a cause worthy of recognition!

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

It has helped a friend of mine that was diagnosed with JDM in November 2010.

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

Raise awareness in countries across the world!

 
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