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105 Reviews
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April 17, 2014

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April 17, 2014

Cure JM has played a vital role in our lives for the last 9+ years. This disease is VERY rare and it isolates you. Cure JM has taken us out of isolation and connected us to a world that understands what we go through on a daily basis. This disease is constantly changing our daughter. But through all of the ups and downs the people we have come in contact with at Cure Jm are there to help support and guide. I hope we can always be a part of this wonderful family and be the Blessing to others that Cure JM has been to us!
April 17, 2014

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April 17, 2014

When my daughter was diagnosed with juvenile dermatomyositis, we were alone. There was no social media related to this, nor any groups. When we stumbled onto CureJM we were thrilled. there were others with this disease and they were able to give us reliable and easy to understand information as well as connect us to others. We are so grateful to them!
April 16, 2014

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April 16, 2014

CureJM has kept me sane and carried me through many rough times. I don't know what I would do without the great people who keep it together.

Ways to make it better...

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

I wouldn't change a thing!

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?

2014

April 15, 2014

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April 15, 2014

Cure JM has been very supportive when my son past away a year go. With me doing a Benefit to help Cure JM awareness and help find a cure, they have been very helpful and supportive.

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?

2014

April 15, 2014

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1 previous review
June 16, 2011

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 avai... more

April 15, 2014

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.
June 16, 2011
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.

The Great!

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

finding the support and information necessary to cope with my childs illness

Ways to make it better...

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

that more people knew about it

April 15, 2014

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1 previous review
July 17, 2012

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 sug... more

April 15, 2014

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.

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?

2014

July 17, 2012

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.

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

April 14, 2014

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April 14, 2014

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
April 14, 2014

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April 14, 2014

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.
May 14, 2013

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1 previous review
October 16, 2012

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 find... more

May 14, 2013

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.

More feedback...

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

October 16, 2012
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.

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

May 10, 2013

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2 previous reviews - show all
October 25, 2012

The Cure JM Foundation is a volunteer-managed organization dedicated to finding a cure for Juvenile Myositis (JM). JM is a group of rare and life-threatening autoimmune conditions affecting approximat... more

May 10, 2013

A foundation that gives families hope, knowledge, and love when a JM diagnosis turns your life upside down. I don't know what I would of done after my daughter was dx last year if it wasn't for this foundation. I was lost, and I am so thankful I had somewhere to turn.

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?

2013

October 25, 2012

The Cure JM Foundation is a volunteer-managed 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.This foundation gives hope and support to familes that have to deal with JM.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

July 16, 2012

My daughter was diagnosed with JM two months ago and being a very rare disease we knew nothing about it, and knew of no one who had it. I came accross The Cure JM Foundation through a google search and reached out to them for help. Not only did they help me understand more about the disease but they helped me come in contact with other families dealing with this disease. It has been an amazing blessing having this foundation as a resource. They have inspired me to raise awareness and fundraise to one day find a cure!!!

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

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