We’re at it again! Since the 2006 Chicago Marathon our family has been fundraising for Juvenile Myositis, a rare auto-immune disease affecting only 5,000 children. Because of YOU, our supportive friends and family, the Cure JM Foundation was able to grant Eric’s Dr. Lauren Pachman a $1 million grant over the past 3 years, creating the Center of Excellence for JM Research at Children’s Memorial Hospital of Chicago. Significant advances were made with this grant; we need to renew and keep the momentum going. Cure JM has also been instrumental in supporting other major research initiatives and creating another Center of JM Excellence. Amazing for a 100 %, family run, all volunteer organization. THANK YOU!!
There’s more work to be done. We need to educate more doctors, continue with the research, and support the experts to write up what they know. Unfortunately, in my JM clinic volunteer experience, I’ve seen the cases that haven’t been identified before it’s been too late. I am determined to raise the funds and spread the word so every child with JM can have the same successful outcome as we hope for Eric.
In 1999, at age 11, Eric rapidly became so weak we had to carry him. It was terrifying. We consulted with numerous doctors before identifying the disease and the expert to treat it. After 3 years of treatment he was medicine-free for a few years then had a flare. Now, a 22-year-old at University of San Diego, Eric is tapering medications on his way to what we hope will be another remission. Other children with this rare disease aren’t as lucky. They weren’t diagnosed properly or treated readily and aggressively. Children who aren’t diagnosed properly develop lifelong problems, which still can be fatal (30 years ago JM had a 30% mortality rate in our country, luckily we’re progressing!) Through Cure JM we hope to change that by creating awareness and raising funds, lots of them, for research.
This year our family is participating in anything we can to help the cause including the Bank of America Chicago Marathon on Oct. 11, 2009.
You can help by:
Reviewing the symptoms of the disease at: www.curejm.org (Rash, weakness)
Donating online at www.firstgiving.com/denuyl, or by mail to: Cure JM Foundation, Donations, 836 Lynwood Drive, Encinitas, CA 92024
Our heartfelt thanks,
Jacque, Bruce, Clark and Eric DenUyl
Cure JM Foundation is a 501(c)(3) nonprofit organization