"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.
Contact Jonah's Just Begun
Jill Wood
CFO of Jonah's Just Begun
Email Contact
(347) 689-2186
www.jonahsjustbegun.org
READ MORE: http://online.wsj.com/article/PR-CO-20130503-913207.html
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