CURE JM FOUNDATION
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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!
A friend of mine was diagnosed with JDM last year. Being able to raise awareness of her disease through this organization has been an amazing opportunity! Cure JM has provided people all across the country chances to fight back. It is most definitely what I consider a cause worthy of recognition!
The Great!
I've personally experienced the results of this organization in...
It has helped a friend of mine that was diagnosed with JDM in November 2010.
Ways to make it better...
If I had to make changes to this organization, I would...
Raise awareness in countries across the world!
My 10 year old daughter was diagnosed Nov. 2010 with Juvenile Dermatomyositis. I don't know what we do without the Cure JM Foundation and all of it's wonderful support for those of us dealing with this rare (horrible) disease!
The Great!
I've personally experienced the results of this organization in...
This organization is the only one of it's kind to help families suffering with JM.
Ways to make it better...
If I had to make changes to this organization, I would...
Be able to say "Found a" Cure JM!
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.
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.
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
When my daughter was finally diagnosed in Jan. 2007 we'd been searching for over a year for reasons as to why my daughter was falling over, couldn't get up off the floor, walk upstairs or put on her clothes without help. The doctor who did finally made the diagnosis told us about a book called Myositis and You that she'd been part of writing and told us it had just been published. The Cure JM Foundation had instigated its authorship and we were so fortunate to have it at the beginning of our journey with JM. During the past 4.5 years we've gone to several conferences that Cure JM has put on, gotten connected with one of the top research and clinical doctors in the field, and met other families going through our same situation. We are so grateful for all the education, support and active ways of contributing to the search for a cure that Cure JM has given us. For an all volunteer organization they do a wonderfully professional job of managing money, keeping records of all the registrants as well as growing into an internationally recognized organization with professional videos and materials that families turn to when first diagnosed or come back to again and again.
The Great!
I've personally experienced the results of this organization in...
helping my child and family become aware of new research, find expert doctors, and learn about treatments from the book they helped publish called Myositis and You. I have become an active member of the organization in fundraising and supporting other families. This all gives me more energy to keep fighting for a cure for my daughter and others like her.
Ways to make it better...
If I had to make changes to this organization, I would...
get more people to join and find a lot more money for research. If we could afford to hire a Development Director whose only job was to write grants we could fund even more research.
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
What one change could this group make that would improve your volunteer experience?
nothing.
Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)
Absolutely. I met and befriended people I would never have met otherwise. I have begun lecturing and teaching about Coping Skills for Families dealing with Chronic Illness as a result of being the Family Support Director.
How did this volunteer experience make you feel?
Like a contributing member of society and was one of the "real" things I could do in helping my child and others like her, in the long run.
When was your last experience with this nonprofit?
2011
Kristen spent years without a diagnosis, and progressively got worse and worse....sitting up was hard, moving was exhausting, just living life was challenging. When we finally got the diagnosis of JDM it was difficult to know this was an incurable disease and one we may well fight her entire life. Treatments started out with high dose steroids. That wrecked havoc on her body, and yet we added more and more drugs as the disease continued to flare. She is now on 19 medications including monthly IVIG infusions. Those themselves now take 16-18 hours 2 days in a row each month,and this the disease continues to rage. Just getting an IV is pure misery for her veins that are now scared beyond belief. When we found CureJM I was literally feeling entirely and completely alone in the world fighting a disease no one hard ever heard of. The support CureJM has given me is incredible. The research they are funding is totally amazing. It is only through research that we will find a cure! The entire volunteer organization dedicates themselves for the sole purpose of finding a cure and making life easier for our kids. Without CureJM no one would even begin to pesue research for this very rare disease. Thank you to CureJM for being there for me and for Kristen!!
The Great!
I've personally experienced the results of this organization in...
support, advice, friendship, and knowledge of medical experts.
Ways to make it better...
If I had to make changes to this organization, I would...
NONE!!! It is truly amazing all this organization does being 100% volunteer. The hours dedicated by so many are beyond belief.
Cure JM is the only foundation that serves our disease. The disease is so rare that there is not any funded research except through the money raised here. Along with the money comes the support available to families and the reassurance offered through other peoples stories and lives.
The Great!
I've personally experienced the results of this organization in...
finding the support and information necessary to cope with my childs illness
Ways to make it better...
If I had to make changes to this organization, I would...
that more people knew about it
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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