15 November, 2014
9:00 AM
Garden City Hotel, Garden City, NY, Register Now

The Time is NOW!

FPWR Research Conference
November 15-16, 2014
Garden City, New York

Registration is now available for a single day!
Clinical Trials Day
Sunday, November 16, 2014
$75 for Sunday Only

View the 2014 FPWR Conference Agenda



You will not want to miss this educational and empowering event! Parents, caregivers and medical professionals are invited to learn the latest in PWS research while meeting others in the PWS community. The two-day program includes presentations by the top PWS researchers as well as a second day dedicated to clinical trials! 

Saturday, November 15th, 9 AM – 5:30 PM,
Dinner Reception 6:30-8:30 PM

Learn the latest in PWS research with presentations from leading PWS researchers:

Anastasia Dimitropoulos Ph.d., Case Western Reserve University
James Hougland Ph.d., Syracuse University
Marc E. Lalande Ph.D., University Connecticut
Rudy Leibel M.D., Columbia University
Christian Schaaf M.D., Ph.D., Baylor College of Medicine
Rachel Wevrick Ph.D., University of Alberta
Lori Garone, MS, PT, HPCS., Physical Therapy In Motion

Get up to date on the landscape of PWS research and the impact of the Global Prader-Willi Syndrome Registry with presentations by:

Theresa Strong Ph.D., Director of Research Programs, FPWR and
Jessica Bohonowych Ph.D., Associate Director of Research Programs.

And get inspired by your fellow PWS families who are making a difference in the lives of all of our loved ones with PWS.

Sunday, November 16th is Clinical Trials Day! 9 AM – 2 PM

Join us for the landmark PWS Patients Forum! This is your chance to help pharmaceutical companies and regulatory agencies (FDA) understand how PWS impacts the individual with PWS and their family. We’ll discuss the biggest challenges our loved ones with PWS face and how we would define an ‘effective’ therapy.  Make sure your voice is heard in the PWS communities guidance to the FDA!

Learn the latest in PWS clinical trials with presentations about new investigational drugs for children and adults with PWS, and an informative and interactive question and answer panel on PWS clinical trials. Clinical trial representatives will be present to answer all your trial questions from several trials including:

  • Beloranib (Tom Hughes, CEO Zafgen, Inc);
  • RM-493 (Keith Gottesdiener, CEO Rhythm Pharmaceuticals);
  • Diazoxide (Neil Cowen, CEO Essentialis);
  • Oxytocin (Dr. Hollander, Mt. Sinai Hospital);
  • and others!


Meet N’ Greet – Friday November 14, 2014

Don’t go it alone the evening before the conference officially starts! Join us at our Meet n’ Greet – a casual cash-bar gathering located at the hotel bar. Kick off your conference experience by making new friends and reconnecting with old.


Kids Camp

FPWR offers a child care program for conference attendees. The program includes care for both November 15 and 16th for $150/per child. All ages are welcome. Kids Camp registration is closed. Please contact susan.hedstrom@fpwr.org if you would like to have your child placed on our wait list. We will try to accommodate your request!


Travel and Accommodations

This year’s conference will be held at the Garden City Hotel.

Rooms at our FPWR conference hotel: The Garden City Hotel are currently sold out. Additional rooms at the Garden City Hotel may become available after October 14th. If you would like to be added to a wait list, please email susan.hedstrom@fpwr.org.

Garden City Hotel
Phone: (516) 747–3000
web: http://www.gardencityhotel.com/

Additional rooms have been blocked for conference participants at the La Quinta Inn and Suites approximately 2.8 miles down the road from the conference hotel. A shuttle will be available to take conference attendees between the hotels The nightly rate at the La Quinta is $132.05.

821 Stewart Ave.
Garden City, NY 11530

To make your reservation, please call  516-705-9000 and ask for La Quinta in Garden City, NY and the Foundation for Prader-Willi Research group.  Please also state the room type that you are requesting, arrival and departure dates.


Airport Travel Information

  • Airports
    • John F. Kennedy International Airport (JFK) is located off of the Belt Parkway in Jamaica, NY.  By car, JFK is approximately 20 minutes from The Garden City Hotel.  JFK services all major cities, both nationally and internationally.  For a list of airlines that are serviced by JFK, click here: http://www.panynj.gov/airports/jfk-airlines.html
      • Ways to travel from JFK to The Garden City Hotel
        • AirTran:  The AirTran is probably the most convenient and inexpensive way to travel from the airport to GCH.  You can board the AirTran from inside JFK, and can connect with the Long Island Rail Road at Jamaica Station in Queens.  You will take a LIRR train from Jamaica to Garden City, which will stop right in front of the hotel.  The cost of using the AirTran is $15.50, and is about a 35 minute ride.  For more information on the AirTran, and to download a brochure, click here: http://www.panynj.gov/airports/jfk-airtrain.html
        • Taxi: Upon exiting JFK, there will be plenty of cabs that you can hail to bring you to GCH.  Cab fare will likely be upwards of $70.  For more information on taxi service, click here: http://www.panynj.gov/airports/jfk-taxi-car-van-service.html
        • Shared or Private Car or Van Service: JFK has a list of authorized car and van service providers.  The average fare would be $60 (not including tip).  You can view this list, and find contact information for these providers by clicking here: http://www.panynj.gov/airports/jfk-taxi-car-van-service.html
        • Car Rental: If you opt to rent a car to take you from the airport to GCH, there are plenty of rental companies within the airport.  You can find a list of these companies, and their contact information here: http://www.panynj.gov/airports/jfk-car-rental.html


    • LaGuardia Airport is located off of the Long Island Expressway in Flushing, NY.   By car, LaGuardia is about a 25 minutes away from The Garden City Hotel.   LaGuardia services many major cities both nationally and internationally.  For a list of the airlines that are serviced by LaGuardia, click here: http://www.panynj.gov/airports/lga-airlines.html
      • Ways to travel from LaGuardia Airport to GCH


    • Long Island Macarthur Airport  is located on Long Island in Ronkonkoma, NY.  By car, Macarthur is about 30 minutes from The Garden City Hotel.
      • Ways to travel from Macarthur to GCH:
        • Taxi:  Village Taxi services Macarthur Airport, and can be reached at (631) 588 – 1055.  The fare from Macarthur to GCH is $80.
        • Car Rental: If you opt to rent a car to take you from the airport to GCH, there are plenty of rental companies within the airport.  You can find a list of these companies, and their contact information here: http://www.macarthurairport.com/ground-trans/on-site-car-rentals