The Cure JM Foundation is dedicated to finding a cure for a group of rare diseases known as juvenile myositis (JM), while simultaneously providing critical support to those with the condition. The Duke Department of Pediatrics was recently designated as a Cure JM Center of Excellence. “It is an honor to be named as a Cure JM Center of Excellence. I appreciate the great progress this organization has made to advance education, clinical care and discoveries for juvenile myositis,” said Ann M. Reed, MD, chair of the Duke Department of Pediatrics, physician-in-chief of Duke Children’s, and Duke’s Cure JM Center Director.
Juvenile myositis (JM)
JM is a group of rare, potentially life-threatening autoimmune diseases that begins in childhood. Juvenile dermatomyositis (JDM) and juvenile polymyositis (JPM) can be considered subgroups of the broader disease. Approximately 2 to 4 children in a million are diagnosed each year. JM affects girls twice as often as boys.
The exact cause of JM is unknown, but it is believed that the body’s own immune system plays a role. Immune cells attack muscle cells and blood vessel cells in the skin and muscle. This leads to the symptoms of the condition, which include weak muscles, skin rash, fatigue, and sometimes other problems like joint pain, gastrointestinal complications, and vasculitic ulcers. Rash is generally found in JDM but not JPM. The disease course ranges from mild to severe.
There are no treatments that can cure JM. There are treatments that can reduce symptoms of the condition, but many of these have significant side effects of their own.
In October 2003, Cure JM was established by Lisa Felix and Shari and Tom Hume, parents of children with JM, and Harriet Bollar, grandmother of an affected child. The foundation is centered in Encinitas, CA.
Since its beginning, Cure JM has raised over $11 million through grassroots fundraisers throughout the country. These have allowed Cure JM to fund a number of important projects.
Promoting JM research is one of the foundation’s primary goals. In response to a need for JM research and treatment centers, the foundation has helped establish research centers at the Ann & Robert H Lurie Children’s Hospital of Chicago, one at George Washington University in Washington, DC, and most recently, one at Duke University in Durham, NC.
The foundation has also helped secure additional funding for JM research from the NIH. Cure JM also funds additional research projects, working with Duke University and with the Childhood Arthritis and Rheumatology Research Alliance and at several other research centers as well. The research funded by Cure JM has led to a number of different research developments, particularly concerning the genetics of JM.
Providing patient outreach and support is another central aim. The foundation provides targeted information to those newly diagnosed, as well as other detailed information about how to live with JM and navigate the healthcare system. The foundation compiled the first book about JM for a non-professional audience, Myositis and You. Cure JM has also held National Family Educational Conferences to bring together researchers and clinicians and help educate families about advances in the field.
Cure JM also provides a number of ways for families to interact with and learn from each other through social network boards for both parents and grandparents. It has connected over 2,900 patient and families families in 40 different countries. Cure JM also has an extensive social media presence raising general awareness of the condition.
For more information about the Cure JM Foundation, please visit the Cure JM Foundation website.