2008 FPWR Conference Agenda

2008 Foundation for Prader-Willi Research Annual Conference
Lead the Way...Change Their Future!
Sunday, September 7 - Tuesday, September 9
Crystal Gateway Marriott, Arlington, VA


Sunday, September 7th 
 9:00 AM – 5:00 PM Lead the Way…Change Their Future! Registration 
 2:00 PM– 3:45 PM Leading the Way: The New Face of PWS Research     
Location: Salon F & G
The Honorable Ed Royce, California
Dan Driscoll, MD and Jennifer Miller, MD, University of Florida, Angelman, Rett, and Prader-Willi Syndromes Consortium Center
Daniela Rubin, PhD, California State University, Fullerton

Get off to a great start with words of welcome and wisdom from Representative Ed Royce. Then listen to leading PWS researchers from around the country as they update us on their important work and how it is changing the face of Prader-Willi syndrome! Learn about the research funded by the recent Department of Defense PWS grant and the Rare Diseases Clinical Research Network of the National Institutes of Health.
 2:00 PM – 5:30 PM  CAMP FPWR: Hand in Hand Painting Project
Location: Salon D & E
Your children will have the opportunity to participate in an arts and crafts project that will later be given to selected individuals who have gone above and beyond in their efforts to support the Foundation for Prader-Willi Research. These individuals have made a difference in your children's' lives and the lives of all children with PWS.
 3:45 PM – 4:00 PM Break & Crystal Gateway Marriott Check-in
Please check with the front desk as you arrive at the hotel, your room may be ready prior to 4:00 PM. If not, the front desk will hold onto your luggage until they are able to get you check in.
 4:00 PM – 5:30 PM     Changing Their Future: The Power of Advocacy
Location: Salon F & G
Rick Spees, Legislative and Governmental Affairs for Akerman Senterfitt
Jane Sergeant, Legislative and Governmental Affairs for Akerman Senterfitt
Amy Porter, Chief of Staff, the Honorable Ed Royce

Yes, YOU can make a difference! In this session, you will learn from the experts how to effectively advocate for your loved one and how to make your voice heard on Capitol Hill. The skills that you leave with will give you the power to change your child's life!
 6:30 PM – 9:00 PM The Road to Success: One Father's Story
Location: Salon F & G
Joel Wood, Co-Founder of The Foundation to Eradicate Duchenne, Inc.
www.duchennemd.org

Drop off the kids and enjoy an adults-only cocktail reception and dinner as we welcome you to DC! Hear the inspiring story of a father's unstoppable crusade to help his son, diagnosed with a rare and deadly disease at age 3. You will be awed at the power that a parent has to change the future when love is the inspiration!
 6:30 PM – 9:00 PM CAMP FPWR: Movie & Pajama Party
Location: Salon E
Kids put on your PJ's and join us for pizza and movies. While you enjoy a cocktail reception and dinner with Special Guest Speaker Rick Spees, your children will unwind and have a fun night of movies and games.
 Monday, September 8th
 8:00 AM – 9:00 AM Complimentary FPWR Breakfast
Location: Sky-view Lounge, Crystal Gateway Marriot
Breakfast will be served between 8:00 AM and 9:00 AM. Families, please stop by and join FPWR for a warm breakfast to get you started for the rest of the day.
 9:00 AM – 11:00 AM Making it Happen: The FPWR in Action
Location: Alexandria
Theresa Strong, PhD
Chair, FPWR Scientific Board; Director of FPWR Grant Process
The FPWR is advancing the field of PWS research every day and making great things happen for our loved ones! This two-hour session will connect the dots between the work that the FPWR does and the tremendous advances that are happening in the field of PWS research. Come and learn how your hard work is paying off in dividends and what the future holds!
 9:00 AM – 11:30 PM CAMP FPWR: Splash Bash Pool Party
Location: Mt. Vernon & McLean
Beach balls, games and crafts-let's spend the day preparing for the pool. We'll make sun visors and other crafts to take with us to Belle Haven Country Club as well, as take off our shoes and boogie to surf music.
 11:45 AM Transportation Departs for Belle Haven Country Club
 11:30 AM Boxed Lunch To-Go   
As you hop on the bus for transportation to Belle Haven Country Club, grab a boxed lunch to take with you to enjoy on board or by the pool.

 12:45 PM – 4:30 PM Family Fun Day at the Pool
Relax, sunbathe, swim and mingle with families and children of supporters of the 3rd Annual Foundation for Prader-Willi Charity Event.
 3:00 PM 3rd Annual Foundation for Prader-Willi Research Awards Ceremony
An opportunity to thank those who have made a difference in your child's life. Join us as we award the winning teams from the day's festivities. Please be aware that a picnic buffet will be served for players and guests during this time.
 4:30 PM Transportation Departs for Crystal Gateway Marriott
TBD Dinner on own 
 7:00 PM – 8:30 PM Living and Learning Together
Lauren Schwartz Roth, PhD, facilitator
President, FPWR
In this informal roundtable discussion, talk with other parents and family members about the challenges of living with PWS. Share your stories, both joyous and sorrowful, and learn more about our community and the unique experiences that we share.
 7:00 PM – 8:30 PM CAMP FPWR - Bedtime Stories & Songs
While parents share stories and tips in a round table discussion, kids will be sharing stories and songs as they relax after a day at the pool.
 Tuesday, September 9th
 7:00 AM – 8:15 AM Complimentary FPWR Breakfast
Location: Sky-view Lounge, Crystal Gateway Marriot
Breakfast will be served between 8:00 AM and 9:00 AM. Families, please stop by and join FPWR for a warm breakfast to get you started for the rest of the day.

8:30 AM Board Bus for Transportation to Capitol Hill 
8:45 AM Transportation Departs for Capitol Hill
FPWR Families may want to check out prior to departing for the Hill. Transportation will not return to the hotel until after check out. Luggage may either be stored at the front desk or dropped off at the Capitol Hill Club for families departing directly from the Hill.
10:00 AM Taking the Lead: Hike the Hill for PWS!
This is it - your chance to take the lead in the fight for your loved ones' future! Join us as we travel together to Capitol Hill to show our strength and make our voices heard. Don't miss this chance to tell your Senator and Representative first-hand about how they can help us defeat PWS! You will return home empowered, energized, and inspired!
10:00 AM -2:00 PM    Complimentary FPWR Refreshments & Lunch
Location: Capitol Hill Club
300 First Street, SE
Take a break from Hiking the Hill and stop by the Capitol Hill Club for refreshments and lunch. Refreshments will be served from 10:00 AM - 2:00 PM and lunch will be served from 11:00 AM - 1:00 PM.
1:00 PM  Crystal Gateway Marriott Hotel Check-Out
2:00 PM  Congressional Appointments End
2:30 PM  Transportation Returns to Hotel