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
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  

There are two great thins that Cure JM brings: a wealth of information when you are most feeling lost, as was our case after our daughter was diagnosed with JDM last year. Cure JM has does an outstanding job of getting the right information into your hands quickly, and making you feel welcome and supported. The second great value is fundraising for a disease for which so much is still unknown. The research they support is critical to further understanding of the disease and to improve the odds of our children having full and normal lives.

Was this review helpful? 
Rating: 5 stars  

From the very beginning of my child's diagnosis, the CureJM Foundation has been a part of our lives. I was referred to them by another mom that I had found on Facebook in a support group. The website is very informational and the staff is amazing. They quickly respond to inquires, emails, calls, etc. I decided to host a fundraiser for the foundation in honor of my daughter and they have been beyond supportive of me. I love this organization!

Was this review helpful? 
Rating: 5 stars  

Cure JM has played a vital role in our lives for the last 9+ years. This disease is VERY rare and it isolates you. Cure JM has taken us out of isolation and connected us to a world that understands what we go through on a daily basis. This disease is constantly changing our daughter. But through all of the ups and downs the people we have come in contact with at Cure Jm are there to help support and guide. I hope we can always be a part of this wonderful family and be the Blessing to others that Cure JM has been to us!

Was this review helpful? 
Rating: 5 stars  

When my daughter was diagnosed with juvenile dermatomyositis, we were alone. There was no social media related to this, nor any groups. When we stumbled onto CureJM we were thrilled. there were others with this disease and they were able to give us reliable and easy to understand information as well as connect us to others. We are so grateful to them!

Was this review helpful? 
Rating: 5 stars  

CureJM has kept me sane and carried me through many rough times. I don't know what I would do without the great people who keep it together.

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

I wouldn't change a thing!

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?

2014

Was this review helpful? 
Rating: 5 stars  

Cure JM has been very supportive when my son past away a year go. With me doing a Benefit to help Cure JM awareness and help find a cure, they have been very helpful and supportive.

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?

2014

Was this review helpful? 
Rating: 5 stars  

My daughter has been diagnosed with JDM for 7 years now and I have often found peace and reprieve in the CureJM site and family. This site is completely dedicated to support of families and those effected by the disease. This is where we all come together and try to cope with this poorly known/understood/researched disease.

Was this review helpful? 
1 previous review
Rating: 5 stars  

1 person found this review helpful

Cure JM is the only foundation that serves our disease. The disease is so rare that there is not any funded research except through the money raised here. Along with the money comes the support available to families and the reassurance offered through other peoples stories and lives.

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

finding the support and information necessary to cope with my childs illness

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

that more people knew about it

Was this review helpful? 
Rating: 5 stars  

My daughter was diagnosed with Juvenile Dermatomyositis 4 years ago. We were so overwhelmed initially. There wasn't a lot of information out there on this rare disease...until we found Cure JM Foundation! We found answers, friends, and support. This is a great group run with a lot of heart.

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?

2014

Was this review helpful? 
1 previous review
Rating: 5 stars  

My daughter was diagnosed with a rare auto immune disease when she was 4 years old. We had no idea where to turn and there was not a lot of research or information for us to tap into. Our doctor suggested CureJM and we are so greatful that she did! At CureJM we have have found not only reliable information but a whole network of people who understand what we are going through when not many other people can. Cure JM helped to fund the only book written about JDM and it has been like a Bible to us as we navigate through this tricky and scary road. I think had we not come across this foundation we would be dealing with his and feeling very lonely and miserable, instead we have a second family of supportive and knowledgable people that mean the world to us.

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

Was this review helpful? 
Rating: 5 stars  

I was lost until I found CureJm. My daughter was diagnosed 2 years ago. We didn't know anyone else with this rare disease. We found Cure JM, and got connected with other Texas families. I am forever grateful not only do we now have friends we have forever support and new family members. Thank you Cure JM. The Myositis and You book has been our road map to recovery

Was this review helpful? 
Rating: 5 stars  

CureJM is a wonderful charity. Not only do they raise money to find a cure for this rare disease, but they also provide ongoing support through suggestions, connections to other families, and information on current research and activities. They provide support to families that goes well beyond fundraising.

Was this review helpful?