Tuesday, March 29, 2011

New York State PWS Conference

I am so grateful that I have had the opportunity to help raise money to support the NIH plan to advance Prader-Willi Syndrome research. The One Small Step International Event and the Go the Extra Mile event give me a chance to help advance research by raising money for this plan that is supported by both FPWR and PWSA. I am also grateful that I can stay up to date with the support services in New York State by being a board member for my state chapter.

One month from today, April 29th and 30th, PWANY will be hosting its 21st annual conference in Albany, NY. Last year was my family's first year attending the NYS conference and it was so much fun connecting with other NYS families, actually, families from all over the country and Canada attended last year! It is such a great opportunity to make connections and learn a ton from some really experienced PWS experts, including Dr. Moris Angulo, Janalee Heinemann, MSW and B.J. Goff, Ed.D.

This year there will be some great break out sessions and a super fun dinner dance on Friday night. Last year Ellie won the biggest stuffed animal dog from the basket raffles. She was so excited that she spent the night dancing with this dog that was bigger than her!

This years breakout sessions include topics on advocacy, sleep issues, behavior issues, IEPs, Residential facilities, estate planning and sharing sessions for families to connect. There will also be a special sharing session for newly diagnosed families and a keynote speaker from OPWDD.

I hope you can make it!!

Here is the link....



  1. Ellie was so cute with that dog last year!! :)

  2. Hi Rachel,
    Let me know how I can donate or participate, even from afar!
    With warmest wishes,
    Mary Fichtner