BENEFITING: Cure JM Foundation
Michelle Best wrote -
EIGHT years ago, our lives changed forever. Our healthy family suddenly wasn't healthy. Our sweet Jamesy had his world turned upside down.
First he complained he hurt, a lot. Walking two blocks onto the beach was too far. He was too tired. Then he started falling. There was a giant goose egg on his forehead because he didn't have the strength the catch himself as he fell. Then there was the day when he proudly announced he could get up off the floor. My mind was racing. Since when was that an achievement.
That fall, James was diagnosed with juvenile dermatomyositis (JDM). It turned out the random collection of symptoms he had experienced for at least 18 months were due to the JDM. We were told 2-3 years of treatment and he would be fine. Eight years later, he is not fine.
However, somewhere around 50,000 pills, hundreds of chemo injections, lots of infusions and countless topical a later, James is doing better and we are grateful. Better for James still means infusions, chemo shots, 28 pills a day, multiple therapies, chronic pain/fatigue and a half day at school. Still, we are grateful. We no longer strive for remission but rather, a medicated stability.
We are grateful for all the love, prayers and support we have received over the years. As we embark in fundraising for CureJM again this year, we remember to be grateful for all of the amazing advice, consultations and treatment plans provided as a direct result of our participation with CureJM. James has benefitted from treatments as a result of CureJM funded research. And this is why we come back year after year seeking support for CureJM. $10 or $100. Every donation makes a difference.
You can be a hero to a child with JM.
Each year, approximately 2 to 4 children in a million in the United States are diagnosed with Juvenile Dermatomyositis (JDM) and Juvenile Polymyositis (JPM), the rare and life-threatening autoimmune diseases collectively known as Juvenile Myositis (JM). JM causes the body’s own immune system to attack healthy cells and tissues, which can cause pain, weakness, inability to walk and disfigurement. In some severe cases it can even be fatal. And there is no cure…YET.
And that’s where you come in.
On January 17th, 2016, families will be participating in the St. Pete Beach Classic to raise awareness of JM and raise funds for JM research. It’s all part of Cure JM’s 2016 National Educational Conference and Fundraiser, a multi-day event designed to help JM Families and Physicians connect while sharing the latest information in JM research and treatments.
Please consider making a gift now. Over 90% of each gift goes directly to Juvenile Myositis research and education programs, so your gift will bring us closer to a cure.
What could be more heroic?