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  

We are so grateful to CureJM. My son was diagnosed with juvenile dermatomyositis nearly 8 years ago. Unfortunately, we were only peripherally aware of CureJM until four years ago when a member of the board convinced me to become involved. Nonetheless, we benefitted from CureJM funded research and joined in a research study recommended by CureJM. That study led to a longstanding relationship with a top researcher in my son's disease. We have seen her for consultations multiple times over the years, even as recently as May. Her commitment to finding a cure and improving outcomes has been pivotal for my son and so many others. CureJM made this happen.

During the past four years, the relationships I have built via CureJM have been a lifeline for me. I have learned so much about my son's illness and how to help him. I have received guidance and support. My son and I, our family as a whole, no longer walk this path alone. Instead, we are part of a community where we laugh, cry, learn and advocate together.

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1 previous review
Rating: 5 stars  

It has now been seven years since my son showed his first symptoms of juvenile dermatomyositis (JDM). He was looked at by two doctors who downplayed what I saw. 6 months later he had additional symptoms and while he then received solid treatment to address both symptoms, there was no thought to put the symptoms together. Even as additional and more serious symptoms arose, they were never considered together. This is because most physicians are simply not aware of JDM. The net result is that my son went 18 months with an untreated inflammatory muscle disease attacking his body.

Then we had specialists who opted not to follow even standard protocols for treating JDM. We were lost, angry and confused and unaware of options and supports. About this time I joined the CureJM group on Facebook. Through this group I have learned much and am therefore better able to find solid medical providers for my son.

CureJM sponsors research and clinics and my son we have taken advantage of both. Although we have not yet reached remission, my son is finally seeing a professional who works closely with the lead researcher supported by CureJM. In other words, he is finally in good hands.

Not only does CureJM support research and the clinics but the other goal is awareness. Awareness would have saved my son years of damage to his body. In the past couple of years I have found more and more providers in different specialities who have heard of JDM. I believe this is largely in response to the huge effort put forward by CureJM.

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

A lot

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

Definitely

When was your last experience with this nonprofit?

2013

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1 previous review
Rating: 5 stars  

1 person found this review helpful

My son was diagnosed with JDM five years ago. It wasn't until about a year ago I found CureJM. JDM is a rare disease and my family walked the path alone with no support for way too long. Since finding CureJM and becoming peripherally involved, I have experienced incredible support, learned a great deal more about my son's illness and have even been able to take advantage of medical resources supported by CureJM. My family has just returned from our first CureJM conference and for the first time my son and husband know we are not alone. CureJM cannot cure my child (yet), but they have provided resources which help me help my son.

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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Rating: 5 stars  

Cure jm has been a huge support system for my family, specifically my sister. I am very thankful to have been welcomed into such a great organization.

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Rating: 5 stars  

When my son was diagnosed with Juvenile Myositis we were scared and felt alone. My son's doctor told us about Cure JM. We joined hoping to learn something about this disease, but we gained so much more than we thought we would -- we gained knowledge, support and hope.

Cure JM sent us educational materials -- a book, brochures and a welcome kit -- and it was everything we needed. We learned about the disease and how to support and take care of our son. The Cure JM Message Board and Family Support Network rallied behind us to answer our questions, support us and just listen when we needed to talk. And most importantly, Cure JM helped my son to meet another child with JM in our area. Having a friend to talk to who knows what he is going through has helped him so much.

I can't imagine fighting this disease without Cure JM and their support.

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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  

2 people 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  

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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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

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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

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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.

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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

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