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Adults with PWS Advisory Board


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 Board members.

“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 providers.

  • Don’t give me food or money without my parents or care provider’s permission.

  • Please 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!”)

  • Talk to me directly, not the person with me. Respect me as an adult.

  • Please understand that my muscle strength and energy are lower than yours.

  • I have 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, FL

 

 

 

edited: 02/09/2012

 

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