Cure JM Foundation

Rating: 4.97 stars   131 reviews

Address:

836 Lynwood Dr. Encinitas CA 92024 USA

Mission:

Cure JM Foundation's mission is to find a cure for Juvenile Myositis and improve the lives of families affected by JM.

Results:

Raised $10 million for research and educational programs. Helped establish 2 research and treatment centers. Provided support to 2,500 patients and family members. Funded the first-ever book solely about JM with contributions from 80 medical professionals. Held 9 family conferences and 6 symposiums for the medical community. Supported over 120 research studies to accelerate progress toward a cure.

Geographic areas served:

the United States and worldwide

Programs:

2 research and treatment centers; annual conferences for patients and their families; annual symposiums for the medical community; support groups and educational materials

2016 Top-Rated Nonprofit
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More Info

(760) 487-1079
http://curejm.org

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Reviews for Cure JM Foundation

Rating: 5 stars  

Our daughter was diagnosed at four-and-a-half years old with Juvenile Dermatomyositis (JDM), a rare disease without a cure. It was an extremely confusing and frightening time for our family. We didn’t know anyone else with the disease and we didn’t know where to turn. Then we found Cure JM. Cure JM, which happens to be the only organization focused exclusively on Juvenile Myositis, was an absolute lifesaver. Cure JM gave us what we needed most: access to the latest information and research and connection to other families who have experience with JDM and who understood the challenges we were facing. Most importantly, Cure JM provided us with hope. Through the tireless commitment of the staff and community members , Cure JM has raised considerable funds and is now able to provide research grants to world class physicians seeking a cure. Today we have a ten year old daughter (with the disease in remission!) and we can hold onto our dream that one day there will be a cure for her and other children like her.

 
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Rating: 5 stars  

I am 27 but diagnosed with JDM at 10. I had the rash 2 years beforge being diagnosed. When I was diagnosed we had very limited information and CURE JM was not available. My mother wrote a diary for about 2 years when I was first diagnosed to give others some information about JDM online and to see if we could find others with it as well. We were alone going through all the early stages. I see how helpful CURE JM is to recently diagnosed and also myself now. A group of moms/ dads/ grandparents all trying to raise awareness and funds to find a cure for their loved one! It is an amazing group of families that will do anything so their child doesn't have to suffer. Cure JM is amazing with funding research and hopefully getting closer to finding a cure! Everyday is a step closer! Thank you to all the strong parents/ grandparents/ families, friends and our research doctors for all that you do .. which is who cure JM is made up of!

 
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Rating: 5 stars  

CURE JM was the first and best information I have found on my son's diagnosis. The book"Myositis and me" was fundraised to pay for production of the only book written on my son's diagnosis. That and the support of this non-profit is invaluable to our son and family. THANK YOU for all you do Cure JM.

 
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Rating: 5 stars  

1 person found this review helpful

Nearly 10 years ago, we began noticing a rash on my son's hands. 8 months later he lost control of his bowels. Then he couldn't walk over the sand dune onto the beach. It took over 18 months to find a diagnosis and help for my boy. He has juvenile dermatomyositis (JDM).

Today, the average time to diagnosis is 6 months, with many kids finding a diagnosis much sooner. Much of this is because of the efforts of CureJM.

After diagnosis, we walked my son's JDM path alone. We finally connected with CureJM four years into the journey. Then we finally met another family with JDM.

I have learned so much from CureJM. First hand knowledge from parents fighting our same battle has been invaluable. Attending conferences with physicians specializing in JDM ha left me with more knowledge and great questions to ask our treating physician.

In addition, CureJM supports two Juvenile Myositis clinics. My son has made multiple visits to one of them and now, an expert in JDM consults regularly in his care.

To say CureJM has made a difference in our family would be an understatement. I cannot even imagine the past four years without the resources CureJM provides. We are forever grateful.

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

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  

1 person found this review helpful

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  

2 people 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  

Being diagnosed with a rare autoimmune disease we felt so alone until we found CureJM! This amazing group of families gave us hope and support! Finding a cure is the one mission and shared by all families and CureJM will make our dream come true!

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

CureJM is a one of a kind organization made up entirely of parents and families of kids with JM. The support I have been personally given has helped me through the last several years in fighting this incurable disease. CureJM not only raises awareness, supports families and especially parents, but raise money to fund research for the cure I believe they will ultimately be responsible for. To now be able to give back by being a parent volunteer to this incredible organization and group of parents is amazing!

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

CureJM is a one of a kind organization! Besides giving hope, support, help, and raising awareness, the fundraising efforts and success of this volunteer organization is amazing! This is the only organization solely dedicated to finding a cure for JM and not letting another child suffer. I can truly say that CureJM is a lifeline to so many of us with children with JM and we would be lost without them! Without CureJM the fight for a CURE wouldn't exist! I thank God each and every day for this amazing organization! Thank you to Tom and Shari Hume for having the determination and drive to start CureJM and lead us towards a CURE for our kids!

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

This all volunteer organization is truly more than special! CureJM has given me more support than I ever imagined to help me better understand and deal with this rare disease my daughter has. I would be truly lost without CureJM and am proud to now say I am a part of the incredible volunteers that make CureJM one of a kind!

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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1 previous review
Rating: 5 stars  

1 person found this review helpful

CureJM is a life saver! Having a rare disease is beyond difficult, and leaves you feeling so alone in the world. Yet when I found CureJm I knew there was hope, there were others like my daughter, there was support, there were people who cared! There were other parents who reached out to me to help me to survive this world of JM. From fundraising to find a Cure, to one on one parent and family support CureJM does it all for so many families and kids. It is the sole efforts of this incredible all volunteer group that will make JM not a treatable disease BUT a curable disease! I can't imagine where I would be if it weren't for CureJM and all they do! I now volunteer my time with CureJM to help give to others what has been given to me for my daughter.

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  

1 person found this review helpful

Kristen spent years without a diagnosis, and progressively got worse and worse....sitting up was hard, moving was exhausting, just living life was challenging. When we finally got the diagnosis of JDM it was difficult to know this was an incurable disease and one we may well fight her entire life. Treatments started out with high dose steroids. That wrecked havoc on her body, and yet we added more and more drugs as the disease continued to flare. She is now on 19 medications including monthly IVIG infusions. Those themselves now take 16-18 hours 2 days in a row each month,and this the disease continues to rage. Just getting an IV is pure misery for her veins that are now scared beyond belief. When we found CureJM I was literally feeling entirely and completely alone in the world fighting a disease no one hard ever heard of. The support CureJM has given me is incredible. The research they are funding is totally amazing. It is only through research that we will find a cure! The entire volunteer organization dedicates themselves for the sole purpose of finding a cure and making life easier for our kids. Without CureJM no one would even begin to pesue research for this very rare disease. Thank you to CureJM for being there for me and for Kristen!!

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

support, advice, friendship, and knowledge of medical experts.

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

NONE!!! It is truly amazing all this organization does being 100% volunteer. The hours dedicated by so many are beyond belief.

 
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Rating: 5 stars  

1 person found this review helpful

What an am amazing group. We went to the conference and my daughter met other girls and boys like her. She has made friends for life from all over the world!! I hope one day we are able to find a cure!!!

 
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Rating: 5 stars  

2 people found this review helpful

Our daughter was diagnosed with JDM when she was just 4 years old. She is now 14 and the Cure JM Foundation has been such a blessing in our life! Their one goal is to find a cure for JM. They are the ONLY organization dedicated to this. They fund research for JM and help families find the care and treatment their children need. They educate the public and raise awareness for JM. Most of all the provide a safe place for families to interact and meet each other. With a disease like JM families can go a lifetime and never meet another JM family because of its rarity. They are an invaluable resource for families like mine...we have battled JM together for over 10 years!

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?

2015

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

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  

1 person found this review helpful

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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