CURE JM FOUNDATION

Rating: 4.96 stars   108 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 seven 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 1,500 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.
2014 Top-Rated Nonprofit
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EIN 35-2222262
(760) 487-1079
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Community Reviews

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  

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

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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  

When my daughter was first diagnosed with JDM, I had no idea what that meant. When I found the JM MOMS message board on Facebook, I slowly began to learn more. Not only did I discover things about this disease, but I also discovered things about the people behind the CURE JM Foundation. I learned that this organization does not have an office, does not have expense accounts, and they are not paid for their time. They do what they do because someone in their family was diagnosed with JDM. And even when they are having difficulties paying their own family expenses, medical bills, they still put their first foot forward to raising money to the CURE JM group hoping that one day a cure will be found. The major pharmaceuticals and drug companies may have forgotten about this disease and not doing the research needed to help find a cure because of how rare it is. It is because of these people, it will not be forgotten. I read something once; no matter how rare a disease is does not matter if your child or family member has it. I give everyone in the CURE JM site an A++.

Would you volunteer for this group again?

Definitely

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? 
Rating: 5 stars  

1 person found this review helpful

This past weekend, I attended my first Cure JM Conference. I went there, wanting to learn as much as I could about JDM so I could help find a cure for my 6 year old grandson Kinser who was diagnosed in August of 2010. I wanted medical information, anything that I use to help him and the other children with this disease. To be honest, most of the medical information was so far over my head that I had a hard time grasping the information presented. Then, I realized the real reason I was there. It was for support, the kind you get when you realize that there is a "community/family" out there for you. To help you cope. To give you strength. To give you courage to fight against something that has no boundries or feelings like you do. The entire time I spent time with the Cure JM Foundation family, I felt courage coming from each and everyone of those in attendence. This could only have been accomplished if the Foundation existed, without them, we would be standing alone. That is something no family should ever feel when dealing with an Orphan Disease. The Cure JM Foundation deserves to be recognized for this award because they exist for the families to have hope.

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?

2012

Was this review helpful? 
Rating: 5 stars  

My daughter was diagnosed with Juvenile Dermatomyositis four years ago. Getting this diagnosis was frightening to say the least. I was so fortunate to have found CureJM. Within one day of registering my daughter and her diagnosis on the CureJM web site, I was contacted by another mom facing the same circumstances. CureJM provided comfort, information, and a constructive path forward to find a cure for this devastating and rare disease. I will forever be indebted and I will continue to volunteer and fight until no child suffers with this rare and incurable illness.

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?

2012

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

My 15 year old daughter was diagnosed with Juvenile Dermatomyositis almost 3 years ago. A google search at that time came up with the CureJM Foundation web site. I registered and within a matter of hours was greeted by what would soon become my extended family. Had it not been for CureJM, I would not have had the crucial information and support to get me through 3 tough, long years. My daughter take 32 pills a day, has weekly chemo injections, and 10 hour infusions every 3 weeks. I hate this disease, but I am grateful every day that a group of dedicated parents took the time and effort to create CureJM, making resources available from diagnosis to -- God willing -- remission.

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

every aspect of my life since my daughter was diagnosed with Juvenile Dermatomyositis.

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

raise and provide the necessary funds to find a cure to this rare and potentially fatal childhood disease, ensuring our children won't suffer another day.

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?

Quite well

Would you recommend this group to a friend?

Definitely

What one change could this group make that would improve your volunteer experience?

I would devote more time and effort to eradicate this disease.

How did this volunteer experience make you feel?

Like I was making a difference in the fight against this disease.

When was your last experience with this nonprofit?

2011

Was this review helpful? 
Rating: 5 stars  

Cure JM Foundation has been there to support us from the very day my daughter was diagnosed with Juvenile Dermatomyositis. I emailed each member of their board from the website about who the top doctors were and how to get in touch with them. I had responses back in no time at all. They also let me know about their free educational conference that was coming up in 3 weeks from that day. WIthout these wonderful people and this amazing group of volunteers we would not be where we are today with our daughter! Great people all in the same shoes. It is ran by the very parents that are dealing with the same disease and have been in your shoes! They support research from very caring and compassionate doctors. It is more like a family of everyone who becomes involved. It is more than just a foundation who wants your money, who is not in your shoes, who is going to pay their own salaries. This is a group of people who are doing everything they can to try and save lives!

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?

2012

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

I found CureJM website the day my daughter was diagnosed with Juvenile Dermatomyositis. I found the board members personal emails on the site and sent them each an email explaining that we had just been diagnosed and did not know what to do. I received emails in return very promptly and they have supported us through this process. They were having their annual educationalconference and fundraiser within 3 weeks of our diagnosis. They gave me all the information and were so great and welcoming when we showed up.

Without the personal help of this organization and definitely the research they have funded my daughter would not be in the shape she is in today. The Myositis and You book is like a bible to many JM families. This was a great project done by this organization.

The passion of this organization stems from the fact that it is led and driven by people directly affected with this disease. It is not a hobby or a cause to support. It is every day life that the board and all of us have to live and deal with. A cure for our kids is not a community service project, but a real life passion!!!

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

Our daily life we connect to other families dealing with the same problems. We share information and educate each other. This organization is the spine for families with this disease and supports many of us daily.

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

Try to help get National recognition from a strong support network. See if we could get some sort of government help or support.

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Rating: 5 stars  

My son was diagnosed with JDM in 2009 at the age of two. The Cure JM Foundation was my flash light in a pitch dark tunnel. The foundation has taken this devastating part of my life and turned into something very much bearable. If it wasn't for Cure JM, my experience with this disease would be much different. I am grateful for the endless information, support, and knowledge I find there. Thanks to there conventions each year, we are able to stay connected to the latest medical information that is out. We are grateful for the rare opportunity to be able to check in with some of the best medical professionals who have dedicated there careers to this disease. These same conventions that are held have also been based around running events. Thanks to Cure JM, I have ran 3 full marathons since my sons diagnosis. Thank you Cure JM for your help and the gift of a positive spin on all this.

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?

2012

Was this review helpful? 
Rating: 5 stars  

This organization helped my child get an early diagnosis - my Google search located their Web page and I actually took the information to my doctor... this most certainly made a difference in my child's quality of life and will hopefully make a difference in her disease outcome.

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?

2012

Was this review helpful? 
Rating: 5 stars  

2 people found this review helpful

Our daughter Casey Nicole was diagnosed with Polymyositis, November 2007 during her freshman year in college, Casey was 17 at the time. Casey had been to numerous doctors and had gone through numerous diagnoses before she had received a proper diagnoses. Because of the LACK OF knowledge of this rare auto immune disease, Casey's treatments came too late. We, Casey, lost her battle with JPM, JDM only after 17 months of fighting. Casey was 19. It was a few months after this, that I came in contact with Cure JM via TMA message board. Thanks Rhonda, Shari, & HarrietB!! Not only does this wonderful group of parents support each other they all truly care for each other, MOST OF ALL there is a genuine love for each of these kids! Including for our Casey Nicole, I can't express enough what each of them have done for me and for our continuing to fight this disease, In Casey's memory. To help find better treatments, education for families and physicians, awareness for the public, and ultimately to one day fine a cure. I will always be here to continue this fight and working with Cure JM.

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?

2012

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

Wonderful organization that reaches out to support each family who has a child with JM. My nephew Mason recently lost his battle with JM and there is nothing I want more than to continue to work with this wonderful group and continue to fight for a cure. It may not have come in his lifetime but the hope is that enough money will be raised, that the research will continue and a cure will be found so no more families have to lose their beloved child/sibling/grandchild/nephew. So no more children have to be in chronic pain and sickness from this horrible disease. The Cure JM Foundation is an extention of family. Truely wonderful group.

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?

2012

Was this review helpful?