SOURCE: Jonah's Just Begun

Jonah's Just Begun

July 16, 2012 12:30 ET

Third Annual "Salut, Prost, Cheers... To A Cure" to Benefit Jonah's Just Begun -- a Non-Profit Organization Developing a Cure for Sanfilippo Syndrome, a Rare, Fatal, Pediatric Disease

Event Follows Congress' Inclusion of ULTRA Act Provision That Empowers the FDA to Accelerate Approval of Lifesaving Treatments

MCMINNVILLE, OR--(Marketwire - Jul 16, 2012) -

WHO:
Jonah's Just Begun, a non-profit organization focused on developing a cure for Sanfilippo Syndrome, a rare, fatal disease typically diagnosed in the preschool years. 

WHAT:
"Salut, Prost, Cheers... To A Cure"
A wine tasting and silent auction. Twelve local Willamette Valley wineries and one brewery will be pouring. Attendees will enjoy the best wines that the Willamette Valley has to offer. Hors d'oeuvre and live music performed by the Jake Blair Band in the beautiful fields of Stoller Vineyards. Patrons can shop the wine inspired boutique and bid on auction items: local artwork, dining experiences, and wine.

WHERE:
Stoller Vineyards
16161 NE McDougall Road
Dayton, OR 97114

WHEN:
August 12, 2012
4-7 PM

TICKETS:
Individual: $50
Sponsored Table: $750
Tickets may be purchased onsite or in advance at: http://conta.cc/JJB2012Stoller 
Donations will be graciously accepted onsite or at: http://jonahsjustbegun.org

"It is through the generosity of patrons and participants at events such as this that have enabled us to fund medical research that will save my son's and other children's lives," said Jill Wood, founder and CFO of Jonah's Just Begun. "We are so very grateful to all of our supporters." 

Jonah's Just Begun a 501 (c) 3 was founded in 2010 by Jonah's parents. JJB raises funds for medical research for the ultra rare pediatric disease Sanfilippo Syndrome, with emphasis on subtype C. Sanfilippo Syndrome is caused by a genetic defect, resulting in the body's inability to break down a complex sugar molecule. After a period of normal development, the child will start to present with delays in speech and cognition, develop behavioral problems, hyperactivity, sleep disturbance, seizures and profound mental decline. As the damage progresses, they become unable to eat or walk on their own and die before adulthood.

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