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105 Reviews
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May 10, 2013

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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.

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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

July 27, 2012

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July 27, 2012

When our daughter was diagnosed with juvenile dermatomyositis in 2009 we were at a point in our lives that we didn't know what to believe about this disease. Her doctor and staff gave us the web site to Cure JM Foundation. The Cure JM foundation has been very informative with info and encouraging. The Foundation has helped my daughter see she is not alone in the and through CJMF we have talked with others going through some of the same difficulties. Not to mention the Love and support . We made a page for our daughter to help Cure JM Foundation spreed the word about this disease. These kids deserve a cure!!

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Will you volunteer or donate to this organization?

Definitely

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

A lot

When was your last experience with this nonprofit?

2012

July 18, 2012

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1 previous review
June 16, 2011

Our daughter was diagnosed when she was 3 years old. She is now 9. After months of being so overwhelmed we came across the Cure JM foundation. We were sent a welcome pack immediately with some bracel... more

July 18, 2012

When our daughter was first diagnosed with Juvenile Dermatomyositis her doctor told us about Cure JM. Since we have come in contact with some of the most amazing people and they have all been such a wonderful support system to our daughter and our family. This last year we held a fundraiser to help Cure JM raise money. We want a Cure for our daughter and for all the other kids suffering with this rare disease. I feel that Cure JM is such a wonderful and supportive foundation. They keep us up to date on all new informations about medicines and research and even fundraising events. We are so thankful for this group and are so appreciative of the support we get from them and the people they have put us in touch with.

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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?

2011

June 16, 2011
1 person found this review helpful

Our daughter was diagnosed when she was 3 years old. She is now 9. After months of being so overwhelmed we came across the Cure JM foundation. We were sent a welcome pack immediately with some bracelets and some other family and patient support information. Our daughter loved a part on their website with pictures of other children also with the disease. It has really helped her feel like she isn't the only one dealing with Dermatomyositis. We are so thankful for Cure JM. Jay and Julie

The Great!

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

receiving information when we were first diagnosed and not feeling so alone.

Ways to make it better...

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

I think that they are doing a great job in spreading the word about this very rare disease.

July 17, 2012

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July 17, 2012

There is so much to be said about an all volunteer based organization. And even more so about its amazing community. It brings us all together as a family. My name is Johana. I am not a jdm patient, nor a am i a doctor. I can say that My family and i are jdm Survivors. Although my little brother didnt. His name : Jose . He fought his battle & won in the sense that he didnt let the illness bring his spirits down. He always saw the good in people and in the life we were given. He is the reason i was so strong. My brother was six when he was diagnosed and he left us at the age of 18. if it werent for the reasearch cure jm funds, we wouldnt have had the privelage of seeing what an amazing young man he turned out to be. Still, the disease took him alot sooner than anyone ever expecta. And although writing about him and his illness is always difficult, I implore to anyone and everyone to please get involved. Help us Spread awareness. Help us find a cure.

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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?

2011

July 17, 2012

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July 17, 2012

We stumbled across the Cure JM foundation online researching symptoms my then 4year some was experiencing. We had been seen by many doctors over the previous 6 months and were getting nowhere while his symptoms were acelorating. The photos and information provided on the site gave us the answers we were looking for!!! It was exactly what had been going on with my son. I took the information that was very well set out and easy to understand to our doctor and demanded a blood test. I was right we got a diagnosis of JDM. We turned back to Cure JM for information and support. We are in Australia where there is nothing set up or no info for patients / families other than what's provided by doctors which is mostly medical jargon that the average joe wouldn't understand. I was greeted warmly and pointed in the direction of the message boards and also given contacts of other families in Australia! Also they have provided us with information for our general practicioner who had never heard of JDM and also for school, along with current sun safety advice. While we are not close enough to get involved in current events hosted by cure JM the distance has made no difference to the wonderful people there who make sure we feel supported, informed and part of a community. Without cure JM, we may not have found a diagnosis for my son. And I would not have been empowered with the knowledge and experience of other parents facing the same challenges. I am forever grateful they are there.

The Great!

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

Without it, we would not have found a diagnosis for my son. His health would have deteriated dramatically before we found the relivent specialist given the symptoms of this rare disease and the lack of knowledge about it in the medical community.

Ways to make it better...

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

Expand it! Make it bigger and world wide!

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?

2012

How did you learn about this organization?

Online searches of medical symptoms

July 16, 2012

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July 16, 2012

My daughter has juvenile dermatomyositis. The CURE JM foundation has helped ro raise money to raise public awareness and to help doctors find a cure. She is currently much better thanks to CURE JM's efforts and Dr. Pachman.

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Will you volunteer or donate to this organization?

Likely

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

Life-changing

When was your last experience with this nonprofit?

2012

October 17, 2012

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1 previous review
July 16, 2012

Where do I begin? I first have to say that I have no idea where we as a family would be without the Cure JM Foundation. My daughter was diagnosed in January of 2005 at the age of 7 with Dermatomyosi... more

October 17, 2012

My daughter was diagnosed in 2005 with JDM and this was our very 1st conference. It was more than I could of dreamed of. Meeting all the families and the wonderful Doctors was such a positive experience. I am so greatful for this group and I don't know where we would be without their support! Thank You CURE JM for always being there as a support system for my family! We are looking forward to the next conference!!!

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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

July 16, 2012

Where do I begin? I first have to say that I have no idea where we as a family would be without the Cure JM Foundation. My daughter was diagnosed in January of 2005 at the age of 7 with Dermatomyositis. When we were first told about her condition we were in shock, we didn't know what to do and we certainly couldn't find anyone to talk to about our new diagnoses. It was such a blessing that we found The Cure JM Foundation. We were able to connect to other families that were going through the same thing that we were. Here we are in July 2012 and we are still fighting the fight. There have been days that I thought that I could not go anymore, then I connect with another JM Mom and I am reminded that I am not alone in this fight. There is no way that I could go throught this without the support of the Cure JM Foundation. We have been so inspired by other families that my daughter and I decided that we were going to have a fundraiser for the Cure JM Foundation the month of July. We are not only spreading awareness about Cure JM, but we are helping to raise money to fund research so that no child has to suffer with this very rare disease again. I will forever be greatful to Cure JM for finding all of the amazing people that I have met throught this Foundation. I would never be able to do this without all your support. Thank You. Darlene Rose

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?

2012

June 23, 2011
1 person found this review helpful

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June 23, 2011
1 person found this review helpful

A friend of mine was diagnosed with JDM last year. Being able to raise awareness of her disease through this organization has been an amazing opportunity! Cure JM has provided people all across the country chances to fight back. It is most definitely what I consider a cause worthy of recognition!

The Great!

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

It has helped a friend of mine that was diagnosed with JDM in November 2010.

Ways to make it better...

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

Raise awareness in countries across the world!

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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