x

RSS Newsfeeds

See all RSS Newsfeeds

Global Regions

Global Regions ( XML Feed )
United States ( XML Feed )

May 1, 2015 4:16 EST

Jonny Lee Miller Jonah’s Just Begun: on July 5th I will run 50 miles through the streets of NYC and I will continue to run for JJB until we reach our goal of a cure while bringing awareness to this most urgent fight to help save kids like Jonah

iCrowdNewswire - May 1, 2015

Jonny Lee Miller Jonah’s Just Begun

jonny lee's Photo

 
 

THE STORY:

We desperately need to find a cure for children suffering from Sanfilippo Syndrome.  This ultra rare disease leads children to suffer brain damage, bone deformities, organ failure, and eventually death, often by their teenage years.   People’s kindness is the only way to fund the search for a cure since Sanfilippo Syndrome is not being paid attention to by big pharmaceutical companies.   

On behalf of JJB, In 2013 I ran my first 50-mile Ultra Marathon in Bear Mountain followed by another 50 Miler in Vermont and then the NYC Marathon.  

This year I ran my first 100 Miler in Maryland, on July 5th I will run 50 miles through the streets of NYC and I will continue to run for JJB until we reach our goal of a cure while bringing awareness to this most urgent fight to help save kids like Jonah.

If everyone gives something today, then the research and studies to find a cure can be accomplished.  Do something amazing and help us help these kids!!  Donations are tax-deductible. Thank you!!!!!!!!!!

Jonny Lee Miller

FOLLOW @JJB4CURE

JONAH’S JUST BEGUN – FOUNDATION TO CURE SANFILIPPO INC. IS A 501(C)3. WE HAVE TWO GOALS: 1) TO DRIVE THE SCIENCE THAT WILL LEAD TO A CURE; 2) TO RAISE AWARENESS FOR ALL RARE DISEASES. WE ALSO EMPOWER AND ENCOURAGE OTHERS AFFECTED BY RARE DISEASES TO ADVOCATE FOR CURES.

The foundation was formed after Jonah Weishaar, the son of Jill Wood and Jeremy Weishaar, was diagnosed with Sanfilippo type C at 22 months old. Jonah was asymptomatic at the time of his diagnosis and still is.

Jill and Jeremy hit the ground running, locating the world’s few scientists that were working on Sanfilippo, and seeking the support of like-minded parents. JJB brought these parents, scientists and clinicians to New York for a meeting in May of 2011, just one year after Jonah’s diagnosis. Together they identified the three most promising approaches to a treatment. The parents went home filled with hope and began their grassroots fundraising efforts. The scientists went back to their labs, inspired by the parents. Today there are half a dozen Sanfilippo research projects in progress.

Sanfilippo is fatal and there is no treatment. For Jonah and friends, the clock is ticking. Jonah will be five this July; right now he’s in the prime of his life. If the disease is not halted soon he will have profound brain damage, eat from a feeding tube and be unable to walk or talk by the time that he is a teenager.

View Related News >
support