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105 Reviews
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April 17, 2014

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April 17, 2014

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.

More feedback...

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

April 17, 2014

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1 previous review
May 10, 2013

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 infor... more

April 17, 2014

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.
May 10, 2013

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.

More feedback...

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

April 15, 2014

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1 previous review
June 16, 2011

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... more

April 15, 2014

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!
June 16, 2011
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.

The Great!

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

They have provided much needed support.

Ways to make it better...

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

None

April 15, 2014

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April 15, 2014

The Cure JM Foundation is a wonderful organization. Friends, information, resources, support, research, connections are just a few of the things that they have given our family.

When our daughter was diagnosed, 4 years ago, we got lucky and found the Cure JM Foundation, where we found
information on her disease and learned about a book that would also help educate us. We were in panic mode and had no idea what we were getting into. Lucky for us, we found all kinds of wonderful support through the Cure JM Foundation.
Our journey has been filled with may downs and some ups, but along the way, we have always had the support of our Cure JM family. Amazing!

More feedback...

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?

2014

April 15, 2014

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April 15, 2014

Cure JM did send a welcome folder for my daughter.
April 15, 2014

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April 15, 2014

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.
April 14, 2014

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April 14, 2014

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!!!!

Ways to make it better...

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

Nothing.

More feedback...

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

April 14, 2014

more

April 14, 2014

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.
April 14, 2014

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April 14, 2014

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.
April 14, 2014

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3 previous reviews - show all
May 11, 2013

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 woul... more

April 14, 2014

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!
May 11, 2013

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!

More feedback...

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

July 17, 2012

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.

More feedback...

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

June 16, 2011

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!!

The Great!

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

support, advice, friendship, and knowledge of medical experts.

Ways to make it better...

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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Help with Spreading Awareness, Family Encouragement, Fundraising, Media and Press outreach and much, much more. To learn more or get involved contact info@curejm.org. Volunteer