Cure JM is an organization of mostly parents and grandparents working to raise money to help fund research for better treatments and a Cure. The organization has grown from a few parents to hundreds. Cure JM hosts many fund raisers each year from individual garage sales to large nationwide walks & auction. In the last decade they have grown from funding a few small studies with a few doctors in their specialty clinics to now being able to work directly with large pharmaceutical companies using advanced studies identifying specific markers of disease allowing a target for the best possible care. They have a very small staff working to utilize research funds in the best way possible to improve the lives of the children faced with the unfortunate fate of having this disease. This disease can be very invasive at its extremes. I see the path they are on with some very intelligent research scientists and it gives me confidence that the care, medication options and education of rheumatologists around the country are better and better each passing day. It's never easy to battle the disease and also raise money but this group has a lot of dedicated parents & family members. My wish for the future is that the work being put in can identify the root cause issue and identify how to turn number of instances per million backwards from an increasing number to a decreasing number so that money is no longer needed to study this disease by someday ridding it from the planet
As a donor and a parent of a child affected by JM it is important to me to know my donations and those I ask of my friends and family are going to be spent in the best way. The Cure JM Foundation leadership provides complete transparency and decisions are thoughtfully made where each dollar is spent. I am able to donate and ask others to support Cur JM with complete pride and confidence it is making a difference in the lives of these children.
Previous Stories
It’s not easy to find the starting point in a grandparents relationship with Juvenile Dermatomyositis. Emotions overcome rational thinking at times. You could say it was a family affair but not entirely. Our wonderful grandson Parker, while playing touch football, came off the field and said “I just can't go on.” My reaction was sure you can. But it was much bigger than that.
My daughter went home, took Parker to a doctor and, subsequently to many doctors, to figure out what the problem was. The final diagnoses was Juvenile Dermatomyositis. Could barely pronounce it. No known cure. Ultimately, a cocktail of meds was the only curative approach. An experimental brew of meds. Couldn’t find anything to read on the subject. Everyone was flying blind. Hospital/Dr visits were endless and the uncertainty was palpable. And Parker was the test tube.
Solutions tend to emerge when families become inquisitive and creative. Parker’s brothers went the lemonade stand route to raise funds. Lots of brotherly love. Mom and Dad, along with a few others similarly affected, decided to raise the stakes and do something more meaningful. It was a race against time in saving lives.
What emerged was a intense effort to educate and inform, find others similarly affected and seek improved care and remedies. It’s now been twelve years. Many speed bumps. Success and failure. But there is now a Cure JM Foundation which has created a national support organization, published a book on JM, financed/conducted research, hosted conferences for medical staff and families and, raised $8 MM to fund research.
The outcome has been a stronger sense of determination to help families deal with a difficult, life threatening medical situation. So if the football analogy holds, were at halftime. A significant effort is still needed to close this out successfully.
Attitude, knowledge, research and fund raising will be the difference makers in the years ahead. Cure JM has all of this. They will succeed.
My name is Casey Dean and I am on the family outreach advisory for CureJM.org. I found this amazing place in a desperate search to find out more about my son's rare disease. This is the ONLY organization dedicated to helping families who have been devastated by this horrible disease. My son, Hunter, was diagnosed in 2009 with Juvenile Dermatomyositis. Our comfortable, perfect little world was turned upside down. Nobody could tell us what was going to happen or how our lives would change forever. When I found CureJM, the members reached out to me and made me aware of things my Doctor couldn't even tell me. Finding CureJM gave my family and I a sense of peace and understanding. I became a part of this organization as quickly as I could to help them spread information about this disease. Family members who have been touched by this disease solely run this organization. We are all in the same boat in this crazy storm. Our hope is to get enough funding for research and find a cure. Sincerely, Casey Dean - Portland, Texas - deaners4@gmail.com