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July 18, 2012

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July 18, 2012

My daughter was diagnosed in July of 2008 with Juvenile Dermatomyositis. Without Cure JM I don't know if our daughter would be getting the care she needs because we wouldn't have know what needed to be done. JDM is extremely rare and Cure JM has so many helpful links and advice. It is our lifesaver.

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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 17, 2012

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July 17, 2012

Excellent charity for a wonderful but undeserved cause.

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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 17, 2012

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July 17, 2012

Cure JM Foundation is made up of people who really care. We are always provided with encouragement and the latest information and know that they are creating awareness. Plus we caregivers get a chance to participate in various events and that is empowering.

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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?

2012

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

I am a client, served (parent), volunteer, and advisory board member. Every part of this organization is amazing as it is run by the most wonderful people!

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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

July 17, 2012

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1 previous review
June 16, 2011

My daughter was diagnosed in Spring 2007 with Juvenile Dermatomyositis. In early Fall 2010, we learned of the Cure JM Foundation and were able to attend a Cure JM Educational Conference that October.... more

July 17, 2012

Our daughter was diagnosed with Juvenile Dermatomyositis more than five years ago. We got involved with the Cure JM Foundation about six months after she was diagnosed. As an all-volunteer non-profit organization, we continue to be impressed with the high degree of integrity & commitment of the Board of Directors, Advisory Council and numerous volunteers who are devoted to funding groundbreaking research in juvenile myositis, a rare pediatric autoimmune disease. Cure JM Foundation also has a commitment to educating & equipping families of children, teens & young adults with juvenile myositis through two Cure JM Centers for Excellence -- one at Lurie Children's Hospital of Chicago and one at the GW Center of Myositis in Washington, DC -- national annual conferences, regional events, Educational Videos about JM (short & long versions), a Cure JM Patient Registry, online helpful resources including a "Welcome Kit", School Resources, Top Ten Tips for Families with JM, updates in JM Research, etc. Another way in which Cure JM displays their dedication to education & awareness is the publishing of "Myositis & You: A Guide to Juvenile Dermatomyositis for Patients, Families & Healthcare Providers". Providing expert information from over 80 medical professionals, this is the first book ever solely dedicated to juvenile myositis and the many aspects of dealing with the disease, its treatments and its complications. Most other publications relegated JM to a few paragraphs or at most a chapter. As a Board Member and volunteer Social Media Director, I am proud and humbled to be part of such a stellar, caring charitable organization. The connections and community we have found have helped us tremendously in our own difficult JM journey with our daughter over the past 5+ years. The hundreds of volunteer hours and the monies donated by our family personally are small in comparison to knowing the inroads we will make as a Cure JM community into this debilitating, life-threatening pediatric disease towards better treatments and, hopefully one day, a cure! ...... So that, one day, children might never suffer or die from JM......

Photos

Videos

Cure JM Foundation - Intro to Juvenile Myositis

The Great!

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

as a JM family, we have been involved in the supportive & educational Cure JM annual conferences. The knowledge of the latest JM research we receive in one conference is truly INVALUABLE! Cure JM, as a family-friendly organization, had many ways for all my children to participate in volunteering -- this way, my daughter's siblings felt as though they were also doing something to help towards a cure for their sister!

Ways to make it better...

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

find more volunteers!! Whether grant writers who could help us find funding, so that we in turn could fund more JM research. Or volunteers willing to organize events that raise funds for research (i.e. - golf tournaments, concerts, etc). Top JM researchers do not lack for research ideas - they just lack for funding.

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

How did you learn about this organization?

In Early Fall 2007, through an internet search on Google.

What is this organization's top short-term priority?

- JM research funding for better disease understanding that leads to better treatments - Equipping families with accurate JM information & resources to be their child's best health advocate

What is its top priority in the long run?

JM research funding towards better treatments and hopefully, one day, a cure! ...."So that, one day, children might never suffer from JM"....

June 16, 2011

My daughter was diagnosed in Spring 2007 with Juvenile Dermatomyositis. In early Fall 2010, we learned of the Cure JM Foundation and were able to attend a Cure JM Educational Conference that October. Learning from top JM/JDM doctors in their field at the Educational Forums and Q&A sessions greatly increased my understanding of this disease, latest research, treatment options, possible prognosis, as well as potential complications. From that conference experience, my daughter had for the first time met other children suffering from and fighting the same rare disease as she -- she felt less alone! She was also encouraged by the stories of those farther along in their treatment and closer to remission. As a family, knowing the supportive community Cure JM is for newly diagnosed families, as well as hearing from the JM experts the difference that Cure JM research dollars make in JM disease understanding & ability to develop future treatments made it an easy decision for us to get very involved as volunteers in this non-profit.

The Great!

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

Part of Cure JM Foundation's mission is to provide support and information for families suffering from JM. It is very personally gratifying to be part of the Social Media outreach that is part of this education and awareness effort. Many times during a year, I see the positive differences that come from a JM family/young adult becoming connected & supported by a community dealing with the same diagnosis. From personal experiences, we have benefited from Cure JM cutting edge research & family support.

Ways to make it better...

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

I would increase funding in order to expand JM research opportunities.

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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

What one change could this group make that would improve your volunteer experience?

Most of the volunteers are the parents of JM children or young adults struggling with JM themselves. Though a group passionate for this cause, we also balance doctors appointments, medical treatments, IV infusions, medication side effects, etc. in addition to our volunteer work for Cure JM - a cure for this terrible disease! We are always looking for talented and energetic volunteers outside of the JM community as well!

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

I have learned a great deal about Social Media and its ability to be used for good in informing & educating friends, family, acquaintances and the general public about this rare disease Juvenile Myositis, as well as the work of the Cure JM Foundation, and the need for more medical research. Through Social Media, we reach not only JM families in the USA, but also several countries across the globe, sharing breakthroughs in JM medical research and sharing online educational resources for newly JM diagnosed families (or those not newly diagnosed, but those new to Cure JM & its resources).

How did this volunteer experience make you feel?

I thoroughly enjoy and am passionate about volunteering for Cure JM, knowing that my time spent helps make a difference in the lives of other JM families. I also know that Cure JM research dollars are well-spent and wisely managed. My daughter JDM case has not been easy to treat and she has personally benefited from the medical breakthroughs made by JM experts funded by Cure JM research dollars.

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 17, 2012

more

July 17, 2012

When our daughter was diagnosed with the rare disease of Juvenile Dermatamyositis, we felt completely lost and alone. Then a search of the internet pointed us to CureJM and prayers were answered. This foundation has such a wealth of knowledge and is the only foundation that is working hard to find a cure. It also guided me to other families so that we might support each other in this journey. Thank You 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?

2012

July 17, 2012

more


1 previous review
June 28, 2011

I have been involved with Cure JM for approximately 10 years. My youngest daughter was diagnosed with juvenile dermatomyositis and Cure JM was my lifeline. During my involvement with Cure JM I was a... more

July 17, 2012

I have been involved with Cure JM for about 10 years or so in one way or another. I was on the board for a year or two and enjoyed that role. I am currently a Family Support Network volunteer. Cure JM has offered tons of information on JM and helped in countless ways to find a cure for this disease.

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

June 28, 2011

I have been involved with Cure JM for approximately 10 years. My youngest daughter was diagnosed with juvenile dermatomyositis and Cure JM was my lifeline. During my involvement with Cure JM I was a board member and am currently a Family Support Representative. This is an all volunteer organization that is focused on finding a cure to help children fighting myositis.

Cure JM is amazing!!!

The Great!

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

They have been supportive emotionally and I know they are working hard to help not only my child but many others fighting myositis. They helped me through one of the most difficult times in my life.

Ways to make it better...

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

None!

July 17, 2012
1 person found this review helpful

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July 17, 2012
1 person found this review helpful

My daughter has been fighting JDM for more than 8 years without a remission. When she was first properly diagnosed there was hardly any information available to us on her disease and where to go for treatment. Fortunately we heard of Dr. Lauren Pachman at Children's Memorial Hospital in Chicago, IL. Dr. Pachman later informed us of Cure JM and how they are working so hard to get funding for this rare disease and help educate patients and their families of what JDM is all about. Thanks to the hard work and dedication of Cure JM, they were able to be part of the Pepsi Refresh program in 2010 and came in first place for the $250,000 award! I truly feel that because of Cure JM, this horrible disease will start receiving more of the much needed funding it needs to finally find a cure. Thanks to Cure JM, we can obtain information and receive support from other families who have a child fighting JDM. Please support Cure JM - these kids need a fighting chance!

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

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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