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.
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 - firstname.lastname@example.org