New York City Gala Raises $94,000 for Prader-Willi Research!

Over 260 people attended the 1st Annual New York City Live Life Full Gala held November 15, 2013 at the historic India House in lower Manhattan.  The event included cocktails & hors d’oeuvres, food stations, live jazz, a silent auction and a live auction hosted by VH1 personality, Jim Shearer.  

Becky McWilliams, gala committee chair, had dreamed of organizing an event in her hometown of Manhattan ever since her son Kieran was born. “There are so many incredible PWS families in the NYC area. This strong network, combined with the generosity and support of so many family, friends and colleagues, allowed us to have a truly amazing event. When I was giving my welcome remarks and looking out into the sea of dedicated and compassionate faces, I was filled with a tremendous sense of hope. Hope that if we continue to raise PWS awareness and plan events such as this that support FPWR, our children will one day be able to live life full. This 1st annual event brought together an outstanding group of people that are now more committed than ever to help us achieve this goal.”
There are many individuals and corporations that deserve thanks for their involvement in the event. The committee members, including, Becky McWilliams, Samantha Chipetz, Dana Capobianco, Alma Schneider, Erica Acosta, Perla Mondriguez, Yinna Ng and Tanya Johnson were instrumental in making the gala such a success. Additionally, we are especially grateful to the wonderful corporations and individuals who sponsored the event, including, Maplelane Capital, BTIG, the Paul E. Singer Foundation, John Barrett Salon, Pfizer, Center Stage Tickets, The Chorney Family, Brian & Denise Sklar, MyClean and Tribeca Pediatrics. We would also like to thank Yayoi Forest, Brooklyn based jeweler, who designed and created a beautiful commemorative ”Live Life Full” necklace, and donated 100% of retail profit from each sale towards the gala. 
As Becky reports, “we are already beginning to plan the 2nd Annual New York City Live Life Full Gala.  We look forward to growing the event so we may continue to work towards advancing research so that all of our precious children, and all individuals living with PWS, will be able to live long and independent lives.” 

Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.