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105 Reviews
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April 5, 2013

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April 5, 2013

My daughter was diagnosed with JDM over 11 years ago. There was very little information available as it is so rare. I felt so alone before I found the Cure JM foundation. I have had so many questions answered and shared concerns and fears. We are in the UK but I feel we have a whole new JM family in the US thanks to Cure JM. T

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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?

Quite well

When was your last experience with this nonprofit?

2013

October 17, 2012
1 person found this review helpful

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October 17, 2012
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.

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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

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!!!

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

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

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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?

2012

October 17, 2012
1 person found this review helpful

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October 17, 2012
1 person found this review helpful

Five years ago, my daughter was diagnosed with juvenile dermatomyositis, and it turned our lives upside down. The medications used to treat it - oral and intravenous steroids, chemotherapy/methotrexate, Intravenous Immunoglobulin (IVIG), and others all have terrible side effects, and since there is no standard protocol for treatment, quality of care varies quite a bit and is really dependent on the doctor's level of experience and knowledge. In our case, the first rheumatologist that treated my daughter did NOT use the most up-to-date learnings and as a result, she relapsed after five months of treatment. Because of the information and support we received from Cure JM, we were able to determine that her treatment was not sufficient, and transfer her care to a JM expert. She has been improving ever since. I shudder to think where we might be today were it not for Cure JM, and I have personally seen this same story play out over and over again with other families. Cure JM has an incredibly direct impact on those affected by this disease, and I will be eternally grateful to have it as a resource.

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

August 21, 2012

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August 21, 2012

I cannot imagine being a part of an organization which has more direct impact on its mission, than Cure JM. All Board Members are actively involved in raising awareness and funds for a cure. We work diligently to make sure all our support is transparent and that all our funds go to awareness and research for a cure. This is the only organization devoted solely to this rare disease, Juvenile Myositis. Our son, 25, was diagnosed at age 11. Today he is in remission. All JM children aren't as lucky. They often aren't diagnosed properly or readily or treated as aggressively as this disease requires. Cure JM's goals also include educating the scientific community so children can be diagnosed and treated immediately. We reach out to the JM community to help with awareness, to support more research and ultimately to find a cure.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

August 11, 2012

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August 11, 2012

My niece was diagnosed with this incurable auto immune disease at age 2 1/2. I wanted to do anything possible to make her better and not see her suffer. Her parents found this wonderful organization full of dedicated individuals (all volunteers!) to support them while providing a resource of information, outreach and hope. I immediately started to volunteer and fund raise for their national events. Through these events, I have witnessed the special work done by this Organization, the true impact it has made for afflicted families and children and the respect Cure JM Foundation's work has earned in the medical community. Today as a Board member I am honored to be part of the team raising awareness and working towards finding a cure.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

August 7, 2012
1 person found this review helpful

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August 7, 2012
1 person found this review helpful

My name is Casey Dean and I am on the family outreach advisory for CureJM.org. I found this amazing place in a desperate search to find out more about my son's rare disease. This is the ONLY organization dedicated to helping families who have been devastated by this horrible disease. My son, Hunter, was diagnosed in 2009 with Juvenile Dermatomyositis. Our comfortable, perfect little world was turned upside down. Nobody could tell us what was going to happen or how our lives would change forever. When I found CureJM, the members reached out to me and made me aware of things my Doctor couldn't even tell me. Finding CureJM gave my family and I a sense of peace and understanding. I became a part of this organization as quickly as I could to help them spread information about this disease. Family members who have been touched by this disease solely run this organization. We are all in the same boat in this crazy storm. Our hope is to get enough funding for research and find a cure. Sincerely, Casey Dean - Portland, Texas - deaners4@gmail.com

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Will you volunteer or donate to this organization beyond what is required of advisors?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

August 2, 2012
1 person found this review helpful

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August 2, 2012
1 person found this review helpful

My daughter was diagnosed in 2004. She was one of the lucky ones as we received a diagnosis within 1 week of her severe symptoms. As a health care professional, it was easier for me to navigate the medical system, thus seeking a 2nd opinion and treatment with one of the leading experts in juvenile myositis (JM). Within months, I became aware of The Cure JM Foundation and began to volunteer. I was moved to action knowing that Cure JM was led by volunteers with the mission of raising funds to support JM research, with almost all monies going to research. We fund 2 centers of excellence in JM Research and have awarded several grants to individuals/institutions studying various aspects of JM. We continue to offer support and educate the public about JM. In addition, we have organized and sponsored free conferences for the medical community led by the leading experts in the field in hopes of providing cutting edge knowledge to those most likely to treat our children with this rare disease. Please consider supporting our cause.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

August 1, 2012
4 people found this review helpful

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1 previous review
June 16, 2011

Our daughter was diagnosed with juvenile dermatomyositis in 2002 at age 2, and Cure JM has been a constant source of help and comfort. Cure JM is all-volunteer, no one draws a salary on the board or ... more

August 1, 2012
4 people found this review helpful

Our daughter was diagnosed in 2002 at the age of 2 1/2 years old. There was limited information in print and online about Juvenile Myositis (JM). There was no dedicated organization to provide support or to fund research for JM. The day our family left the doctor's office after the initial diagnosis, we left with a medical journal article which consisted of about only 8 sentences and indicating a mortality rate of 30%. We were devastated. THAT WAS THEN. THIS IS NOW. Cure JM has funded a 466 page book called "Myositis and You" with updated treatment and and research information for families and medical professionals. By the way, the mortality rate now is actually less than 1%. Cure JM provides regional support reps to help support other JM families. The organization has a very active online JM family network and conducts annual educational conferences for the medical community and for JM families. Cure JM has raised over $3 million dollars for research. Cure JM is led by VOLUNTEERS, so nearly every dollar raised goes to research. Cure JM is a network of passionate and professional leaders (over 25 volunteers) putting their personal talents to work to help ensure kids with this disease can someday have remission and ultimately we find a cure for all kids. I am proud to put leadership talents to work in leading the Cure JM organization. While we have accomplished so much, there is a lot more to do to ensure children both today and in the future do not need to suffer from this disease. Please consider supporting our efforts.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

June 16, 2011

Our daughter was diagnosed with juvenile dermatomyositis in 2002 at age 2, and Cure JM has been a constant source of help and comfort.

Cure JM is all-volunteer, no one draws a salary on the board or in the ranks. When they hold fundraisers they get sponsors to cover the overhead costs or
the board members and volunteers pay these expenses themselves so the vast majority (often in the 95 to 98% range) they raise from others goes DIRECTLY to funding research for a cure (they help pay for research centers in Chicago and Washington, DC) or support programs for JM kids and their families. No major charity (United Way, Komen, Cancer Society, etc.) comes close to that.

They are also still the only NATIONAL organization that dedicates itself SOLELY to helping kids with juvenile myositis diseases and their families cope and find better treatments and a cure.

The Great!

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

many many ways. Friendship with other JM families, insight from the JM medical community, support in troubled times, etc.

Ways to make it better...

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

find them a wealthy patron or huge federal/private grant so more time and effort could be spent finding a cure for this devastating autoimmune disease.

July 31, 2012

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1 previous review
June 16, 2011

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 ho... more

July 31, 2012

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.

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 16, 2011

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.

Photos

The Great!

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

every aspect of my life since my daughter was diagnosed with Juvenile Dermatomyositis.

Ways to make it better...

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.

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?

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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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