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105 Reviews
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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

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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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

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

July 20, 2012

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1 previous review
June 17, 2011

I found CureJM website the day my daughter was diagnosed with Juvenile Dermatomyositis. I found the board members personal emails on the site and sent them each an email explaining that we had just b... more

July 20, 2012

Cure JM Foundation has been there to support us from the very day my daughter was diagnosed with Juvenile Dermatomyositis. I emailed each member of their board from the website about who the top doctors were and how to get in touch with them. I had responses back in no time at all. They also let me know about their free educational conference that was coming up in 3 weeks from that day. WIthout these wonderful people and this amazing group of volunteers we would not be where we are today with our daughter! Great people all in the same shoes. It is ran by the very parents that are dealing with the same disease and have been in your shoes! They support research from very caring and compassionate doctors. It is more like a family of everyone who becomes involved. It is more than just a foundation who wants your money, who is not in your shoes, who is going to pay their own salaries. This is a group of people who are doing everything they can to try and save lives!

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 17, 2011

I found CureJM website the day my daughter was diagnosed with Juvenile Dermatomyositis. I found the board members personal emails on the site and sent them each an email explaining that we had just been diagnosed and did not know what to do. I received emails in return very promptly and they have supported us through this process. They were having their annual educationalconference and fundraiser within 3 weeks of our diagnosis. They gave me all the information and were so great and welcoming when we showed up.

Without the personal help of this organization and definitely the research they have funded my daughter would not be in the shape she is in today. The Myositis and You book is like a bible to many JM families. This was a great project done by this organization.

The passion of this organization stems from the fact that it is led and driven by people directly affected with this disease. It is not a hobby or a cause to support. It is every day life that the board and all of us have to live and deal with. A cure for our kids is not a community service project, but a real life passion!!!

The Great!

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

Our daily life we connect to other families dealing with the same problems. We share information and educate each other. This organization is the spine for families with this disease and supports many of us daily.

Ways to make it better...

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

Try to help get National recognition from a strong support network. See if we could get some sort of government help or support.

July 20, 2012

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July 20, 2012

My son was diagnosed with JDM in 2009 at the age of two. The Cure JM Foundation was my flash light in a pitch dark tunnel. The foundation has taken this devastating part of my life and turned into something very much bearable. If it wasn't for Cure JM, my experience with this disease would be much different. I am grateful for the endless information, support, and knowledge I find there. Thanks to there conventions each year, we are able to stay connected to the latest medical information that is out. We are grateful for the rare opportunity to be able to check in with some of the best medical professionals who have dedicated there careers to this disease. These same conventions that are held have also been based around running events. Thanks to Cure JM, I have ran 3 full marathons since my sons diagnosis. Thank you Cure JM for your help and the gift of a positive spin on all this.

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?

2012

July 20, 2012

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July 20, 2012

This organization helped my child get an early diagnosis - my Google search located their Web page and I actually took the information to my doctor... this most certainly made a difference in my child's quality of life and will hopefully make a difference in her disease outcome.

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

July 19, 2012
2 people found this review helpful

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July 19, 2012
2 people found this review helpful

Our daughter Casey Nicole was diagnosed with Polymyositis, November 2007 during her freshman year in college, Casey was 17 at the time. Casey had been to numerous doctors and had gone through numerous diagnoses before she had received a proper diagnoses. Because of the LACK OF knowledge of this rare auto immune disease, Casey's treatments came too late. We, Casey, lost her battle with JPM, JDM only after 17 months of fighting. Casey was 19. It was a few months after this, that I came in contact with Cure JM via TMA message board. Thanks Rhonda, Shari, & HarrietB!! Not only does this wonderful group of parents support each other they all truly care for each other, MOST OF ALL there is a genuine love for each of these kids! Including for our Casey Nicole, I can't express enough what each of them have done for me and for our continuing to fight this disease, In Casey's memory. To help find better treatments, education for families and physicians, awareness for the public, and ultimately to one day fine a cure. I will always be here to continue this fight and working with Cure JM.

Photos

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

July 18, 2012
1 person found this review helpful

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July 18, 2012
1 person found this review helpful

Wonderful organization that reaches out to support each family who has a child with JM. My nephew Mason recently lost his battle with JM and there is nothing I want more than to continue to work with this wonderful group and continue to fight for a cure. It may not have come in his lifetime but the hope is that enough money will be raised, that the research will continue and a cure will be found so no more families have to lose their beloved child/sibling/grandchild/nephew. So no more children have to be in chronic pain and sickness from this horrible disease. The Cure JM Foundation is an extention of family. Truely wonderful group.

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

April 14, 2013

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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.

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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