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Cure Jm Foundation

Rating: 4.97 stars   117 reviews 11,355

Nonprofit Issues:

Health

Address:

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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More Info

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

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Reviews for Cure Jm Foundation

Rating: 5 stars  

1 person 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  

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

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

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

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

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

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

1 person 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  

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

Was this review helpful? 
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

Was this review helpful? 
Rating: 5 stars  

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  

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

Was this review helpful? 
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  

Cure JM has been a lifesaver for my daughter and myself since the diagnosis of my granddaughter a little over two years ago. Hearing that she had juvenile dermatomyositis was confusing and frightening and Cure JM helped us with lots of information as well as a book. We have made lots of connections and helped raise funds for Cure JM, alongside many other families in the same situations. The conferences are a great place to connect and learn more. I am continually impressed with the determination and heart of Cure JM and the research that is being funded for a cure. I support this organization wholeheartedly and will not stop until we Find A Cure!!

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Rating: 5 stars  

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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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  

It’s not easy to find the starting point in a grandparents relationship with Juvenile Dermatomyositis. Emotions overcome rational thinking at times. You could say it was a family affair but not entirely. Our wonderful grandson Parker, while playing touch football, came off the field and said “I just can't go on.” My reaction was sure you can. But it was much bigger than that.

My daughter went home, took Parker to a doctor and, subsequently to many doctors, to figure out what the problem was. The final diagnoses was Juvenile Dermatomyositis. Could barely pronounce it. No known cure. Ultimately, a cocktail of meds was the only curative approach. An experimental brew of meds. Couldn’t find anything to read on the subject. Everyone was flying blind. Hospital/Dr visits were endless and the uncertainty was palpable. And Parker was the test tube.

Solutions tend to emerge when families become inquisitive and creative. Parker’s brothers went the lemonade stand route to raise funds. Lots of brotherly love.  Mom and Dad, along with a few others similarly affected, decided to raise the stakes and do something more meaningful. It was a race against time in saving lives.  

What emerged was a intense effort to educate and inform, find others similarly affected and seek improved care and remedies. It’s now been twelve years. Many speed bumps. Success and failure. But there is now a Cure JM Foundation which has created a national support organization, published a book on JM, financed/conducted research, hosted conferences for medical staff and families and, raised $8 MM to fund research.

The outcome has been a stronger sense of determination to help families deal with a difficult, life threatening medical situation. So if the football analogy holds, were at halftime. A significant effort is still needed to close this out successfully. 

Attitude, knowledge, research and fund raising will be the difference makers in the years ahead. Cure JM has all of this. They will succeed.

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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  

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

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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