My Nonprofit Reviews
Annie M.
Review for Cure JM Foundation, Leesburg, VA, USA
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......
More Feedback
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!
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.
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"....
Review for Cure JM Foundation, Leesburg, VA, USA
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.
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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.
If I had to make changes to this organization, I would...
I would increase funding in order to expand JM research opportunities.
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
