National campaign could help local kids fight juvenile myositis

ENCINITAS — North County residents have a rare opportunity to make a lifesaving difference in a child’s life — but they have to act quickly.
Voting is open until Aug. 31 in the Pepsi Refresh campaign, which is a project that aims to provide funding for businesses, people and nonprofits that will have a positive impact in the community. The Cure JM Foundation hopes to hold on to its second-place ranking to secure a $250,000 grant that will be awarded to two organizations per month.
All supporters need to do is text message 100850 to 73774 or visit the Pepsi voting website at refresheverything.com/makejmamemory.
The Cure JM Foundation is a local organization that raises funds for juvenile myositis, or JM. If they win the Pepsi Refresh campaign, the grant will benefit more than 20 children in San Diego suffering with the disease including Parker Hume, 12, of Encinitas.
San Diego has a higher incidence of the autoimmune disease than most places in the United States. One theory is that it is due to the abundance of sunshine. Despite boasting world-class medical facilities, there are no doctors or local research and development in the area working to fight the disease.
It is estimated that only three in a million children have this disease, which equates to roughly 5,000 children in the U.S. More than 1,000 new cases are diagnosed each year.
“Even though JM is life-threatening and permanently debilitating, it will not attract attention of pharmaceutical companies because they are not going to make money off of 5,000 kids,” said Parker’s mom, Shari Hume.
Hume added that when her son was diagnosed with the disease at the age of 4, she couldn’t find any local resources, not even a book. She scoured the Internet looking for help and met Harriet Bollar, a Vista resident whose granddaughter was also suffering from the disease.
“We thought we could be the catalyst for a cure so together we co-founded Cure JM in 2003,” Hume said. “Our mission is to raise awareness about the disease, to generate money for research and a cure, and to provide families with emotional support.”
To date, Cure JM has raised more than $2.5 million through grassroots fundraisers all over the country.
The money has helped to fund two JM research centers, one at Chicago Children’s Memorial Research Center and the other at George Washington University in Washington, D.C.
Cure JM has also funded the first book about the disease titled, “Myositis and You,” which was written by more than 100 doctors.
“It’s called juvenile myositis because you are a kid when it starts,” she said. “Adults represent some of the worst cases because they didn’t have the resources as kids we have now.”
Consequently, finding a cure for JM will hopefully thwart the progression of the disease into adulthood.
Hume said that Parker was born normal until the age of 4 when he began having trouble walking, standing and climbing stairs. The disease progressed to the point where he couldn’t walk at all because of weakness in the proximal muscles around the stomach, legs and neck. In addition, Parker had 100 calcium deposits on his stomach, chest, arms and legs.
“The body goes haywire and attacks itself in the skin and muscles,” Hume said. “The disease is so rare that it was six months before Parker was diagnosed. We felt powerless the first year.”
Researchers believe the disease is due to a genetic predisposition, which can be activated by a virus or environmental factors.
Parker has fared better than most kids because of access to state-of-the art medical care. He has spent more than 500 days in the hospital and undergone years of chemotherapy.
“After eight years he’s been able to stop medication,” Hume said.
Although he tires easily due to permanent muscle damage, Parker has compensated in other ways.
“Parker’s a comic and won an award in his class for the funniest kid,” Hume said. “He’s also good at acting.”
The local community has rallied behind Parker through fundraisers hosted by St. John’s School, where Parker will be entering seventh grade in the fall, and the Encinitas Little League.
Hume says it’s critical that people vote. Currently Cure JM is running neck-to-neck in the Pepsi Refresh competition with the Screamfest Horror Film Festival.
“It’s scary, but more people could vote for horror films than helping sick children,” Hume said.
“Every penny will go to research and education; nothing to salaries and a building,” Hume said. “We are all volunteers juggling other jobs and caring for children.”
For more information, visit curejm.org.

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