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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

May 10, 2013

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May 10, 2013

My daughter was diagnosed with Juvenile Dermatomyositis in 2010. I searched for information, but the only real information that I found was on Cure JM's web site. After a while I discovered that they are the ONLY organization that is searching for a cure specifically for the juvenile population. This non-profit is run by people that have ALL been affected by this disease. They are not just looking for money- they are truly searching for a cure. Their proceeds from their fundraisers go directly to the doctor's that are researching. Not to mention their Facebook private group for family members and people suffering have helped to draw the community closer and further educate the affected population. This non-profit has been a Godsend for us and so many others!

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?

2013

May 10, 2013

more

May 10, 2013

My daughter was diagnosed on October 28, 2011 and the hospital told me that she had Juvenile Dermatomyositis. When I asked what it was the doctor told me there wasn't a lot of information out there to go home and look it up on the internet and I walked out of the hospital scared to death. I went home and looked it up and found Cure JM and have been with them ever since. They have taught me so much and through their community of moms, dads, grandparents, caregivers and family members we have helped each other get through really tough times. Cure JM really does wonderful things for research to help our children get a CURE.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

May 10, 2013

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3 previous reviews - show all
October 17, 2012

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 ... more

May 10, 2013

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.

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?

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

October 17, 2012

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!!

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?

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

July 16, 2012

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!!!

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
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.

The Great!

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.

Ways to make it better...

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.

May 10, 2013

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May 10, 2013

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++.

More feedback...

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

May 3, 2013

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May 3, 2013

It was last year that I first heard of Juvenile Dermatomyositis (JDM) when the dermatologist we saw for my daughter’s odd rash (only on her joints) made the initial diagnoses. In my research, I came upon CureJm site, read every site page, read every forum and overnighted the “Myositis and You” book. When we met with the rheumatologist I had a list of questions in hand, my medical binder (recommended by CureJm) ready, and an expectation of the treatment we would be given. If they had said anything different I had a plan B to reach out to JDM specialists recommended from the CureJM community. The knowledge I gained gave me the strength and focus that I needed, and our family needed, in such an overwhelming situation. Within 2 months of her rash showing she started treatment. Perhaps part of the cure is early detection. I know my daughter is in a much better place now because she got the treatment she needed fast, by luck and by being educated with the wealth of information that CureJM provided, and for this I am forever thankful to CureJM.

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

April 17, 2013

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April 17, 2013

The Cure JM foundation is doing great work to provide information to those who are facing this disease. They are also doing a lot to raise awareness, and improve and increase research for this disease. Being diagnosed with JM or JDM changes your life in many ways, the Cure JM Foundation has helped us cope with these changes.

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

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

April 14, 2013

more


2 previous reviews - show all
July 18, 2012

This all volunteer organization continues to grow. Talk about the "little engine that could"! Parents and grandparents find time to fundraise on top of being full-time care givers. I pray for ... more

April 14, 2013

Now that Cure JM is coming up to their 10th anniversary, I am delighted to see that they have not wavered in funding research, educating families and the medical profession and raising awareness. I wish I could give them 10 stars instead of 5. They deserve it.

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?

2013

July 18, 2012


This all volunteer organization continues to grow. Talk about the
"little engine that could"! Parents and grandparents find time to
fundraise on top of being full-time care givers. I pray for the
day that more research will find a cure. Then we will all shout
"Take
that JDM!!!"

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?

2012

June 20, 2011

This is one of the very best, hardest working and dedicated group of volunteers I have ever seen. Accomplishments in 7 years? Amazing!
Besides research, the book Myositis and You ant the video for families in shock with this diagnosis, Cure JM has been a blessing in educating the medical
profession and families coping with this debilitating disease.

The Great!

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

My grandson has been helped by the doctors in different states working together in coordinating his medicines and treatments and connecting us with other families fighting the disease.

Ways to make it better...

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

We need more fundraisers to continue our research in finding a cure.

April 7, 2013
1 person found this review helpful

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April 7, 2013
1 person found this review helpful

The Cure JM Foundation was our life line when faced with this rare, misunderstood disease. From the first time the Cure JM Foundation reached out to us, we knew they were a special group of people. What we didn't know was that over the next three years they would become our second family. We would not be where we are today without the support of the dedicated families of the Cure JM Foundation.

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

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