The following is a guest post from our friend Kevin McKeever, publisher of Always Home and Uncool.
My daughter Megan is a rarity. She is among the three in a million American children with a form of juvenile myositis.
JM is a life-threatening autoimmune disease in which the body’s immune system attacks its own cells and tissues. It first manifested itself in her, then age 2, in the form of a rash on her face and legs. Soon she began to lose strength in her legs, arms and core muscles. She would fall over while sitting on the couch and be unable to right herself.
Two months and three doctors after the first symptoms appeared, we found a specialist who recognized the disease Megan had. The most information she could offer us about juvenile myositis was a handful of pages photocopied from an old medical textbook.
Since that diagnosis back in 2002, my wife Rhonda and I had worked to raise awareness of juvenile myositis and money to fund research into curing this “orphan disease,” the name given to conditions not adopted by the pharmaceutical industry because it sees little financial incentive to develop medications to treat or prevent them. Much of our work has been done through Cure JM Foundation, a 501(c)(3) nonprofit organization created and managed by families like ours that have been affected by juvenile myositis.
Cure JM has raised more than $8 million since 2003, mostly through grassroots fundraisers. The vast majority of that money goes directly to:
- Support doctors and scientists working for our cause. This includes establishing two JM research centers.
- Educating JM families and help them cope by producing collateral materials on treatments and medical research, hosting an annual conference, and managing several social media channels to foster communication.
- Teaching others in the medical community about how to diagnose and treat juvenile myositis by hosting an annual medical conference as well as speaking at other seminars.
Cure JM relies almost exclusively on volunteer support to reach its goal of never, ever letting another child suffer with juvenile myositis. Getting involved is easy. You can:
- Donate to Cure JM Foundation
- Fundraise for Cure JM Foundation
- Volunteer your time or expertise to Cure JM Foundation