Cure Jm Foundation

Rating: 4.97 stars   117 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 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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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  

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  

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

 
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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

 
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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

 
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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

 
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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

 
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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

 
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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

 
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