CURE JM FOUNDATION

Rating: 4.96 stars   108 reviews 3,058

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
http://curejm.org
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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  

1 person found this review helpful

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.

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Rating: 5 stars  

1 person found this review helpful

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!

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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!

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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  

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!

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Role: Board Member
Rating: 5 stars  

Like a ship being tossed on a stormy raging sea, describes how my family and I felt when our young daughter was 1st diagnosed with JM. We were so fortunate to connect with Cure JM shortly after her diagnoses. Cure JM instantly became a part of our extended family and they immediately provided the overwhelming support and resources that we desperately needed at that time. We have the deepest and most sincere admiration for this great nonprofit organization. Still today we see and feel the support and dedication of all the volunteers who serve not only on the board but throughout the organization. Everyone involved with Cure JM strives in their own personal ways along with collaborative efforts to find the ultimate cure for JM. I am humbled and honored to serve on the board. Cure JM is not just a board it's a large tenacious group of concerned caring people who love and support each other and their families who are all involved in doing what ever it takes to make sure no child has to suffer from JM and their ultimate goal is to truly reach a CURE for JM!!!

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

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?

2014

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1 previous review
Rating: 5 stars  

Within just a few short weeks after my daughters diagnosis my wife and I discovered Cure JM and it has changed our lives in such a positive uplifting way. This organization immediately provided us with a wealth of information, support and positive motivation to get involved to keep striving to find a cure for not only our little girl but for all the children and families affected by JM. I personally feel that our daughter would not be where she is today in her battle with JM if my wife and I hadn't immediately become involved in Cure JM. The board and all the other volunteers who serve have made and continue to make a life changing difference in our lives and especially in our daughters. I am so thankful that we discovered Cure JM and have made it an important part of our lives.

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

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  

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  

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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