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  

As a donor and a parent of a child affected by JM it is important to me to know my donations and those I ask of my friends and family are going to be spent in the best way. The Cure JM Foundation leadership provides complete transparency and decisions are thoughtfully made where each dollar is spent. I am able to donate and ask others to support Cur JM with complete pride and confidence it is making a difference in the lives of these children.

 
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1 previous review
Rating: 5 stars  

I am a client, served (parent), volunteer, and advisory board member. Every part of this organization is amazing as it is run by the most wonderful people!

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

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  

Cure JM is a wonderful organization dedicated to finding a cure for Juvenile Myositis. I am proud to raise awareness and funds for these children. Over 91% of all donations go directly to research to find a cure.

 
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1 previous review
Rating: 5 stars  

When my grandson was diagnosed with Juvenile Myositis, I had no idea what it was. After searching the internet, I found the Cure JM Foundation. (The Foundation has a terrific website of information, suggested books to read, and medical/treatment information.) But more importantly, I also found people who could talk to me about this disease, share their first-hand experiences, offer me advice, cry with me, and give me hope. I thought we were alone in this, but found we are not. I consider the people I have met through the Cure JM Foundation to be family. We are all in this together, and have a common goal: find a cure for Juvenile Myositis.

 
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Rating: 5 stars  

1 person found this review helpful

Our journey started just over seventeen years ago when our daughter was diagnosed with Juvenile Dermatomyositis at the age of two. For many years we struggled with very little information. When we first were introduced to the Cure JM foundation I felt like someone finally understood what we were going through and we had a support system. Since that day there has never been a time that we needed something they have not been helpful and supportive. This organization has one goal and they are doing everything in their power to find a cure for JM so no other child has to go through what our daughter and so many other children have gone through. There is no doubt in my mind that we would not have received best possible care for our daughter without the support of the Cure JM Foundation.

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

My daughter was diagnosed in 1997, at that time there was little to no information to help parents of newly diagnosed children.

From the moment I made contact with Cure JM, they have made us feel like family members and have been with us every step of the way.

No concern is too big or too small, anytime I have had a question someone has been there to help.

We were given the names of two specialists that have ultimately helped turn our daughter's disease around.

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

the way the care for every child diagnosed with this debilitating disease. Cure JM's goal is to never let another child suffer again. They are completely dedicated to finding a cure.

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

help to raise awareness.

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?

A lot

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?

2011

 
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Rating: 5 stars  

3 people found this review helpful

Without the Cure JM Foundation I don't know how we would have gotten through the first year after my grandson was diagnosed with Juvenile Dermatomyositis. The support we received was beyond anything I expected. Now that my grandson is in remission I am more than happy to help families that are dealing with this disease and all that goes along with the diagnosis. Cure JM does so much for families with JM by supporting us and raising funds for much needed research. Meeting some of the families at the annual conference was so good for both my grandson and I. I really appreciate all they do for us and all the other families.

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

Since my grandson was first diagnosed 6 years ago the Cure JM Foundation has been my rock. They are always willing to help answer questions, give advice, comfort, support and rejoice the good times. Besides being a wonderful support group for families affected by JM they do everything they can to help raise awareness and research funds to help find a cure for our kids.
I have had the opportunity to attend a Cure JM Conference and learn more about this rare disease, not only from other parents going through the same thing but, from some of the leading specialists in treating and researching this disease. Cure JM funds this research so that doctor's can more easily recognize Juvenile Myositis so that our kids will get a quicker diagnosis, which is critical for a good outcome. They are also researching to find better treatments and one day a cure. Cure JM is the only foundation in the States helping parents and trying to find a cure!!! Without them I don't know how I would have gotten through the diagnosis of this disease and the last 6 years.

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?

Some

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

Cure JM has been a great support system for me since my grandson was diagnosed 5.5 years ago. I really don't know how I would have coped without all the wonderful people involved. This past weekend we had the opportunity to travel to the Cure JM Educational conference and meet the doctor's researching this disease looking for better treatments and a cure. To meet the wonderful people that are a part of this charity was one of the best highlights of this weekend. To know that all these people understand what we are going through and are there to support us is more than I could ever ask for!!

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?

Some

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?

2012

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

When my grandson was diagnosed with JDM in April, 2007, the rheumatologist we were seeing gave me the URL for the Cure JM Foundation. As soon as I was able to get online I went straight to this website. What I found was a wealth of information and support. The people at Cure JM put their life into raising awareness and funds for research to try and find a cure for Juvenile Myositis. They put their heart and soul into helping those of us caring for these kids, cope with the day to day life of medications, pain, needles, bloodwork and the feeling that they are different from their peers. I have come to love the people at Cure JM as my family and will never be able to thank them enough for everything they do!!!

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  

2 people found this review helpful

My little man was diagnosed in April 2007 with Juvenile Dermatomyositis. Without Cure JM I don't know where I would be today or how I would have gotten through that first year.

Everyone at Cure JM is there to help raise funds for research so that hopefully one day there will be a cure; to support families with children/young adults that suffer from this horrible disease. Research money goes to the the few doctor's in Chicago and Washington that are working to find better treatments and a cure for Juvenile Myositis. Cure JM also helps to raise awareness of this orphan disease.

Cure JM is run completely by volunteers who would give the world to help a find a cure for these children. These people have become very special to me. I am blessed to have them in my life. They care a great deal about this cause and we all hope that with funds raised and research on-going that one day our kids will have a cure.

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

Cure JM members were there to help me learn about this disease and give me the support I need when things get rough. They will help find answers to questions if they don't know off hand.

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

If I had to make changes to this organization it would be to try and find some big name that would help get awareness out there about Juvenile Myositis.

 
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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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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

Cure JM has been a lifesaver for our family. It's the only organization raising funds & awareness for research and offering support to families. Cure JM is an amazing group of family and friends working together for one goal, one dream- a cure for juvenile Myositis.

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

Attended the 2016 CureJM National Conference and it was awesome. It was the first time my 6 year old JM child has ever me someone with the same disease. There were so many opportunities for medial updates and questions - completely invaluable. I came hope feeling validated and with direction as to what changes we needed to make in regards to her medical care. So thankful for this organization!!

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

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  

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  

1 person found this review helpful

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

 
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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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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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