Clear Lake Woman Takes on Cancer With Festival & Run

Heart and sole of the matter
'By DIANA NORTH CHRONICLE CORRESPONDENT

At a very young age, Jori Zemel displayed numerous gifts. She had the eye of a fashion designer and a desire to teach.
Jori surely would have remained an artist, writer and animal lover. But her mother, Nina Zemel, admits that had she lived, her daughter might have been embarrassed that a foundation is named after her.

More than eight years after Jori’s death at age 14, the Jori Zemel Children’s Bone Cancer Foundation will conduct the seventh annual Heart & Sole Music Festival and Cancer Walk April 19 at noon at Clear Lake High School, 2929 Bay Area Blvd.

“She’d be embarrassed that anything was named after her because she didn’t like a lot of recognition,” said Nina Zemel, who is vice president and co-founder of the foundation.

The festival will occur at the school Jori would have attended and where Nina Zemel worked as a counselor until last year.
Live music, clowns, an obstacle course, a climbing wall and other activities precede the three-mile walk that takes participants past the home Jori shared with her parents Brook and Nina and her older brother Ryan.

In 2002, when the Zemels established the foundation in their daughter’s honor, their mission was simple — to save the lives of children with bone cancer, known as osteosarcoma.

“This is one of the most horrific disease that anyone can get,” Brook Zemel said. “There’s chemo, there’s amputations and major surgery. It usually metastasizes into their lungs and it’s like, piece by piece, your life is being surgically removed from you.”

Fighting the disease at their daughter’s side, the Zemels spent many hours researching and seeking medical expertise and even experimental drugs to keep her alive.

Their search revealed a discontinued drug used in clinical trials that showed promise. Called Mifamurtide, or L-MTP-PE, they were told there was none left. But their refusal to give up led them to the owner of the company, who disregarded legal advice and located vials in an out-of-state pharmaceutical warehouse.

Jori finally did receive the experimental drug, but it came too late to stop the spread of the disease that claimed her life. However, in part because of the Zemels’ efforts, children undergoing treatment for bone cancer at The University of Texas M.D. Anderson Cancer Center today are receiving the drug, which is most effective when used in the early stages.

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