Where
The Heath at The McKittrick Hotel, home of Sleep No More
542 W 27th St
New York, NY 10001
*A private elevator will be available to and from event.
Driving Directions
Contact
Jessica DillonFirst Protocol
Jessica.Dillon@firstprotocol.com
Very Special Thanks to...
Your are cordially invited to Jonah's Just Begun, First Annual
"Rare Occurrence Reception"
This special event should not be missed! Hosted by Jonny Lee Miller, from the hit TV series Elementary & Kristine Johnson, WCBS News anchor.
JJB caught the attention of Jonny Lee Miller, when his cameraman Jeremy Weishaar, asked him to help promote a local fundraiser. As Jonny, learned more about Sanfilippo Syndrome, he was compelled to help Jeremy and his wife Jill. To raise awareness and funds for the insidious disease that plagues their son, Jonah.
Sanfilippo Syndrome is an ultra rare genetic disease. It’s neurodegenerative- it slowly causes profound brain damage leading to catastrophic health problems followed by death. There currently is no treatment for Sanfilippo and because of its rarity little attention has been paid to finding a treatment. However there is hope, medical research is now underway. Jonah and children like him now have a chance to fight their fate!
Tickets to this intimate cocktail reception are $700 and can be purchased below.
Our goal is to raise $80,000 for a two year grant covering the salary of a postdoctoral fellowship in the lab of researcher Dr. Alexey Pshezhetsky.
Please contact Jessica Dillon at Jessica.Dillon@FirstProtocol.com if you have any questions regarding the Reception.
Live Art
We are honored to have the very talented artist, Joana Ricou whom will be painting a piece on site during the “Rare Occurrence Reception.” Watch Joana work as she takes her inspiration from Jonah’s Just Begun. Be pre-paired to bid on the piece as it will be auctioned off by nights end!
"I am inspired by research articles and news and often contact researchers directly to learn about their motivations. In the studio, I build on these ideas to form questions about our concepts of self and our place in the world, usually in the form of oil paintings. A painting based on my work with Dr. Alison Barth was published as the cover of the Journal of Neuroscience, supporting what has become my core motivation: that art can both support and contribute to science, and vice-versa. This has driven my work in science art and science education work since and has led to collaborations with galleries, schools and museums in Portugal and the USA, including the Andy Warhol Museum, the Carnegie Science Center, Pittsburgh Zoo & PPG Aquarium, Children's Museum of Pittsburgh and the National Aviary."- Joana Ricou
DJ Cash NYC
AKA Francesco Civetta was born and raised in NYC.
DJ Cash has being DJing professionally since the age of 17. He is based out of New York City but has traveled for gigs to LA, Miami, Canada, France and Italy. Known best for rocking parties with his high-energy blend of rock, hip-hop, funk, soul and house music, Cash has been a staple at numerous movie premiere after parties during Sundance, SXSW, as well as the Toronto and Cannes Film Festivals. Not forgetting his hometown, DJ Cash played during New York Fashion Week for the last six years for several designers and brands.
We are more than excited to have DJ Cash with us at the "Rare Occurence" Reception and adding to the overall experience. Have a listen on Sound Cloud.
Short Film
Sanfilippo Syndrome... assuming that almost everyone in attendance will have never heard of this destructive genetic disease, we have prepared for you a sensitive film, depicting three courageous families, that have dedicated their lives to fighting their children’s fate.
Filmed by Jeremy Weishaar, Camera Operator, Elementary
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