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105 Reviews
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April 16, 2014

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1 previous review
July 24, 2012

Within just a few short weeks after my daughters diagnosis my wife and I discovered Cure JM and it has changed our lives in such a positive uplifting way. This organization immediately provided us wit... more

April 16, 2014

Like a ship being tossed on a stormy raging sea, describes how my family and I felt when our young daughter was 1st diagnosed with JM. We were so fortunate to connect with Cure JM shortly after her diagnoses. Cure JM instantly became a part of our extended family and they immediately provided the overwhelming support and resources that we desperately needed at that time. We have the deepest and most sincere admiration for this great nonprofit organization. Still today we see and feel the support and dedication of all the volunteers who serve not only on the board but throughout the organization. Everyone involved with Cure JM strives in their own personal ways along with collaborative efforts to find the ultimate cure for JM. I am humbled and honored to serve on the board. Cure JM is not just a board it's a large tenacious group of concerned caring people who love and support each other and their families who are all involved in doing what ever it takes to make sure no child has to suffer from JM and their ultimate goal is to truly reach a CURE for JM!!!

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?

2014

July 24, 2012

Within just a few short weeks after my daughters diagnosis my wife and I discovered Cure JM and it has changed our lives in such a positive uplifting way. This organization immediately provided us with a wealth of information, support and positive motivation to get involved to keep striving to find a cure for not only our little girl but for all the children and families affected by JM. I personally feel that our daughter would not be where she is today in her battle with JM if my wife and I hadn't immediately become involved in Cure JM. The board and all the other volunteers who serve have made and continue to make a life changing difference in our lives and especially in our daughters. I am so thankful that we discovered Cure JM and have made it an important part of our lives.

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 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 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 24, 2012

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1 previous review
June 17, 2011

My daughter was diagnosed 3 years ago with Juvenile Myositis, a rare auto-immune disease that causes progressive muscle weakness if left untreated. Soon after receiving the diagnosis I found Cure JM ... more

July 24, 2012

Cure JM Foundation was the first place we turned when our daughter was diagnosed with juvenile myositis. We have received both education and support from Cure JM. The Myositis and You book that Cure JM helped publish was so helpful at the beginning answering many of our questions. Also, we learned about the clinical research doctors who had the most expertise in JM, and our daughter began seeing one of those doctors who has been instrumental in getting her to her current state - virtually symptom free. After participating in a national conference, we joined the board, and we have been happy to support this all volunteer organization as it continues to work towards 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

June 17, 2011
1 person found this review helpful

My daughter was diagnosed 3 years ago with Juvenile Myositis, a rare auto-immune disease that causes progressive muscle weakness if left untreated. Soon after receiving the diagnosis I found Cure JM online and bought the book they published about JM. Because of Cure JM, we were immediately connected to a large, vibrant community of JM families online and provided with a wealth of information on this rare disease. Through Cure JM we came to know of the national experts on this disease, and we now travel to see one of them every 4-6 months. We had the opportunity of meeting many families in person at the 2010 national conference/fundraiser, and we are again attending the 2011 national conference/fundraiser. Being part of this community has helped us cope with what is otherwise a very lonely, difficult journey.

The Great!

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

that the contacts and information I have received through Cure JM has given our daughter a better treatment outcome than would have occurred otherwise. The organization has also provided a positive outlet for me personally as I deal with the changes this diagnosis has had on the whole family. It gives me hope that together our efforts could lead to a cure.

Ways to make it better...

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

build a more robust regional structure with more in person interaction so that people have not only more accessible emotional support, but also the combined manpower for big regional fundraisers. We need to raise funds if we want our kids to lead normal healthy lives.

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?

A lot

Will you tell others about this organization?

Definitely

How did you learn about this organization?

internet search

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

Raising funds for the national conference in Seattle next week.

What is its top priority in the long run?

A cure

When was your last experience with this nonprofit?

2011

July 23, 2012

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July 23, 2012

When my son was diagnosed with JDM I was so alone and terrified of what the future would hold for our family. I found CureJM after searching the Internet for answers. I was amazed at the wealth of knowledge And support CureJM offered me. After attending the annual conference I knew I had to get more involved with this group of amazing families. I am honored to serve on the CureJM Board with men and women who I consider my family. CureJM has changed my life and I thank God everyday that it was founded.

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

July 17, 2012

more


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.

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

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

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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