CURE JM FOUNDATION

Rating: 4.96 stars   105 reviews

Issues: Health

Location: 836 Lynwood Dr Encinitas CA 92024 USA

Mission: As its name implies, the Cure JM Foundation, a 501c(3) non-profit organization, was created specifically to find such a cure, while also providing support and information for families suffering from JM.
Results: It is believed that a third of the children will suffer from JM most of their life, while another third will experience temporary remissions and the other third will experience a permanent remission (no medications, no symptoms).
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.
Programs: Cure JM Foundation is a 501(c)(3) nonprofit organization dedicated to finding a cure for Juvenile Myositis (JM). JM is a group of rare and life-threatening autoimmune conditions affecting approximately 17,000 children in the United States alone. 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
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Community Reviews

Rating: 5 stars  

The Cure JM Foundation has been so helpful, beyond measure. They open the doors of hope and help to anyone affected by this terrible disease, Juvenile Dermatomyositis. Bless them all.

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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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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

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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

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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

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Rating: 5 stars  

Cure JM is an amazing organization with incredible people giving of their time and expertise to help find a cure for children diagnosed with JM. I have been involved with this fantastic non-profit group since 2001 and can't even begin to say how much they have done to help find a cure for JM. They offer education on the disease, family support, grants to help fund research and so much more. Cure JM is truly saving lives!!!!

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

Nothing.

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?

2013

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Rating: 5 stars  

Our daughter was diagnosed 17 years ago. She has not reached remission yet, but with an organization like Cure JM we have not given up hope. At the time of our daughters diagnosis Cure JM did not exist. When we found Cure JM they treated us like family and answered any questions we had. You would never wish this disease on anyone, but knowing that there is an organization/families out there that understand what you are going through makes the journey a bit easier.

There has never been a time that we needed something that Cure JM was not there for us.

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Rating: 5 stars  

Cure JM is an amazing organization and I don't think I could ever express how grateful I am to have found them. If it were not for their existence my daughter's outcome could have been much worse. From me stumbling upon their site and realizing that my daughter's mystery condition was actually JDM to the unwavering support and information about JDM we have received from them, our lives would be very different without them. I have never met such a committed, positive, inspiring and supportive group of people and truly believe this organization's determination can lead to finding a cure.

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Rating: 5 stars  

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  

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

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

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  

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  

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.

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Role: Professional with expertise in this field
Rating: 5 stars  

Cure JM Foundation is a critical hub for all things related to this debilitating condition. The founders Tom and Shari Hume, have been incredible advocates and organizers, bringing a global JM community together and making a difference. Through their fundraising efforts they have also raised important dollars to help fund a treatment and hopefully a cure.

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

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