A meeting at Lido Key, in Sarasota was held October 28-29, 2010 .
Board members reported having a productive two days of work
together. The following is an awareness statement from the Advisory
“What We Want You to Know About Us”
For PWS Awareness Month, the Advisory Board of adults with
Prader-Willi syndrome (PWS) share these thoughts with the world:
Prader-Willi syndrome comes in all sizes, shapes and colors.
If I am
slim, it is due to a lot of effort by me, my parents, and care
give me food or money without my parents or care provider’s
keep food temptations away from me.
Prader-Willi syndrome is not the true shame, it is you bustin on
me and you don’t even know my name (From the PWS rap song, “My
Name’s not Willi!”)
me directly, not the person with me. Respect me as an adult.
understand that my muscle strength and energy are lower than
hopes and dreams and goals – just like you
Advisory Board Members
- Shawn Cooper, GA
- Brooke Fuller, MI
- Conor Heybach, IL
- Kate Kane, MD
- Lauren Lange, GA
- Andy Maurer, SC
- Margaret Miller, PA
- Abbott Philson, ME
Pictures of October 2010 Meeting at Lido Beach,