“A journey of a thousand miles begins with a single step”…or in our case a “miss step.” The miss step was from our son, Parker (age 4), who in the Summer of 2002 was gradually finding it harder to walk, play or even lift his head off a pillow. We came to realize over the months ahead that Parker was gradually being crippled by a rare autoimmune disease, called Juvenile Dermatomyositis.
By Labor Day of 2002, we were at the emergency room at Children's Hospital, carrying our son who could no longer walk. Several previous visits to our pediatrician yielded little help. Not even knowing the specialist to recommend ---- neurology, rheumatology, immunology ---- our pediatrician threw in the towel and told us to hit the ER.
Later, we would understand that the pediatrician's inability to make a diagnosis is regrettably common, as most pediatricians will never see a case of Juvenile Dermatomyositis (JM) in their lifetime.
The weeks that followed were an extremely bleak time for our family. We learned that inflammation is a very standard autoimmune response. However, because of Parker's JM, this autoimmune response was not shutting off and it was destroying his muscles. We learned that approximately 2-3 children out of a million are affected by JM in the United States. We learned that some children with JM will go into remission, some children will battle the disease on and off their whole lives and some children will suffer from crippling side effects, even death.
What we learned most about the disease was that there was very little information about it. Information about what caused the disease, its treatments and prognosis seemed as rare as the disease itself. We could literally count the number of researchers investigating the disease on one hand.
As we threw ourselves into the existing research on JM, the more we realized we could be the catalyst to finding a cure. Through the internet, we connected with Harriet Bollar, whose granddaughter was battling JM. Together, our path became clear; we needed to start a Foundation that could provide support for families coping with JM, raise awareness of JM, and fund research that will ultimately lead to a cure. That is why we started the Cure JM Foundation, a non-profit organization run by ALL volunteers.
To date, the Cure JM Foundation has raised $4 million for research and established two JM research centers, one at Children’s Hospital of Chicago Research Center (Cure JM Program of Excellence in JM Research) under the direction of Dr. Lauren Pachman and another at George Washington University in Washington, D.C. Cure JM also funded the first-ever book about JM, “Myositis and You”, written by over 100 doctors. Additionally, Cure JM has helped connect over 1,000 families in 20 countries to provide mutual support in their battle against JM.
We know we are still early in this journey and we are gratified when a JM family says their child received an earlier diagnosis or better treatment because of our website. Yet, we are devastated to see children still dying from this disease. So, we know there is a longer journey still ahead to reach our ultimate goal…to never, ever let another child suffer from Juvenile Myositis.
Please join us on this important journey by donating today! No amount is too small...every dollar we raise gets us one step closer to a cure!
You can also mail your donation to:
Cure JM Foundation
836 Lynwood Drive
Encinitas, CA 92024
Corporate matching forms can be faxed to: