Our daughter was diagnosed 16 years ago with juvenile dermatomyositis. Cure JM was in its infancy but was so supportive and helped guide us through a very difficult time. Even though our daughter is in remission we are still involved with the Cure JM Foundation. We are so grateful for all the guidance and knowledge we have received over the years. There is no better nonprofit around!!
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.
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.
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!!!"
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.
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.
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.
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.
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!
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!!!
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.
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.
Cure JM is a fantastic resource for newly diagnosed and those who have been battling Myositis for years. The organization provides research to help find a cure for the disease, and Cure JM also provides incredible support for the families struggling with this disease.From the first day of my daughter's diagnosis when I found Cure JM on the internet until now just over two years later, I cannot even count the times that I have gotten answers, sometimes in the middle of the night, to questions or concerns. Additionally, Cure JM provides resources for my teenaged daughter to help her not feel so alone with a rare disease. Unbelievable organization with fantastic leadership and members!
Cure JM has been an amazing resource for our family after my daughter was diagnosed in June 2010 at the age of 11. When her pediatrician knew very little of the disease and her rheumatologist having only a few paitents of this rare disease, Cure JM provided us with information and resources that were amazing! The website provided access to others who have this rare disease and also provided a great deal of information and forms for scools, tips for the family, etc.
On top of all of the benefits Cure JM provides to families, it is a huge funding process for the research that is desperately needed to have a chance to cure Juvenile Myositis. As it is so rare, there is not a lot of research to help these kids. Cure JM has provided funding to a specialist who my daughter sees once a quarter out of state, and we see first hand the benefits each time we go. Whether it is a research study or a new piece of equipment to better analyze the damage to the capillaries, it is attributed to Cure JM.
As a volunteer and fundraiser, Cure JM has been very supportive of my family and daughter as we have used the Cure JM fundraising and events to raise awareness of the disease. For us, on top of the physical symptoms and pain, having people not understand this disease is sometimes just as painful. We are so very thankful for Cure JM!
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.
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......
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 Cure JM Foundation has changed my son and our Families life. I felt so lost when Connor was diagnosed with JM and I was so afraid until CureJm reached out to us with compassion, information and friendships that will last our whole life's. I can not tell you all enough at what a difference they made. Thank You CureJM and all you to to educate and keeping us all motivated to fight for a Cure for our Babies.
To say that this Foundation has been a saving place for me is an understatement. When my grandson was diagnosed in August 2010 with JDM, I felt so helpless and scared for his future. After searching the web for some type of support information, I came across Cure JM Foundation. Just reading the well written information from everyone there put me more at ease.. With this information, I was able to become the support system that my daughter so desperatly needed. This isn't "just a website", it's like a virtual family who is holding your hand, and walking this journey with all of us who have been affected. There should be a 10 star rating here, 5 stars is not enough. Thank you Shari Hume and everyone who gives their life and time to keep us all updated on everything involved in the treatements that are available.
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.
Juvenile Dermatomyositis (JM) is extremely rare (2 children in a million) and can attack any system of the body. Since there is not a cure for JM; funding is desperately needed to continue with research and increase awareness of JM with the general public and the medical community. We believe this is our only possibility of finding a cure. I am the owner of HD Photography and we are making every effort to go big with our fund raising events. This is near and dear to our hearts as my nephew Mason was diagnosed with this debilitating disease at 18 months and he is currently 6 years. This disease has robbed him and other children of their childhood. It brings muscle weakness and much much pain. It causes calcification under the skin that eventually bores itself out cause big sores that are extremely painful and open for infections. There is not a lot known about the disease as it is so rare and we need help raising money for the foundation and bringing attention to the disease. Currently Mason is not able to walk or stand and only has little use of one hand. Because of his immobility it makes bathing difficult as his parents have to lift him. Their insurance denied bath equipment that would make it easier to get him in and out of the tub. He lost his eyes sight earlier this year because of this disease but was able to regain it after a lens replacement surgery on both eyes. Mason's parents are up many hours of the night as Mason wakes up and needs to be rolled due to the fact he cannot do it himself. Mason has had many many surgeries for various failing functions due to the disease but he is a strong fighter. Although their family faces many challenges daily they all maintain their humorous, kind and strong personalities for which we can all be thankful for. HD photography is doing what we can to bring attention to this wonderful foundation. If we all come together and help support this foundation we can all hope that one day there will be a cure. Please help support us in our fight against JM.