SOURCE: Jonah's Just Begun

Jonah's Just Begun

May 03, 2013 18:36 ET

Jonny Lee Miller to Run Ultra-Marathon in Honor of Jonah's Just Begun Foundation to Cure Sanfilippo

Jonny Lee Miller, Lead Actor in the Hit TV Drama Elementary, Will Run His First Ever Ultra-Marathon to Raise Funds for Research and Treatment of Sanfilippo Syndrome

NEW YORK, NY--(Marketwired - May 3, 2013) - Jonny Lee Miller, philanthropist and lead actor in the hit drama Elementary, will be running the Bear Mountain Challenge at Bear Mountain State Park, NY on May 4. Miller will run the ultra-marathon on behalf of Jonah's Just Begun (JJB), a charity whose aim is to find a cure for an ultra-rare pediatric disease known as Sanfilippo Syndrome.

Though Miller has run 16 marathons in the past, this will be his first ever ultra-marathon.

He learned of JJB through Jeremy Weishaar, a cameraman on Elementary and the father of the charity's namesake, Jonah Weishaar. Jonah, who is now four and a half years old, was diagnosed with Sanfilippo Syndrome shortly after birth.

Upon hearing about Jonah's condition, Miller asked Weishaar if he could run a marathon to raise funds for the foundation. Says Miller: "Sometimes you need to help the person standing next to you."

According to Weishaar, Miller's celebrity has raised the non-profit's profile substantially.

"As if running 50 miles wasn't enough, Jonny appeared on The View to promote the race and joined my family and me for an interview with Dr. Sanjay Gupta on CNN. He has set up a Twitter account to send links on how to donate to his effort on crowdrise," said Weishaar.

Jonah is currently in good health, but Jill Wood, his mother and the co-founder of JJB, says he and other Sanfilippo children are in a race against time. Despite the existence of 7,000 rare diseases and an increasing patient population, the federal government has allocated few funds to the research of these diseases. The science behind the four research programs with which JJB is presently involved is being driven by patient groups and advocates.

The donations raised by Jonny's race effort will help tremendously, and will be put towards finding treatments and a cure.

About Jonah's Just Begun-Foundation to Cure Sanfiliipo Inc.
Jonah's Just Begun -- Foundation to Cure Sanfilippo Inc. is a 501(c)3. JJB raises funds and then distributes them to academic researchers focused on Sanfilippo Type C. We have two goals: first, to drive the science that will ultimately lead to a cure for Sanfilippo Type C; and second, to raise awareness for all rare diseases. We also empower and encourage others affected by rare diseases to advocate for cures.

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