From the Desk of the President
August 2011
The last few weeks of summer are finally a bit cooler. August is a quieter time for many of us as camps and school programs are over. It allows me to take a moment and reflect on our chapter’s accomplishments this year.
In February, Cindy Wells organized a get together at Pump It Up, an indoor bouncy house playground.
For the third year in a row, Jarrod and Cindy Wells organized a very successful PWS-NE Walkathon. June 4th was a picture perfect day for families to come together and support PWS. The silent auction items were an impressive array offering gift baskets, Red Sox tickets, photography sessions and much more. The top three First Giving fund raiser’s efforts were rewarded with an I-Pad, Kindle & I-Touch. This major fund raiser allows our chapter to do more for the membership.
On Saturday, August 13th, the Chapter hosted a PWS Family Day at the Foxboro Town Pool.
On September 16th & 17th, PWS-NE, in conjunction with Advocates, Inc and The Latham Centers, will provide a conference “Prader Willi Syndrome: The Possibilities.” An interesting roster of nationally recognized speakers and topics will allow parents and providers to gather, share and learn together and from each other. Please contact jcain@advocatesinc.org if you have any questions about registration.
In November, the Chapter will sponsor three members and one board member to attend the National PWS-USA conference in Orlando, Florida. We will bring back information to share at our next chapter meeting.
In our continued effort to change the MA adult DDS eligibility laws we have retained the expertise of two health care lobbyists. By October we should have a more solid understanding of what obstacles are in our way and a strategy to move forward on this very important effort. As a member, you can help by being willing to contact your state legislators about the medical significance of PWS individuals being eligible for state support as adults. Please consider joining our Chapter. We have lots to do for our children!
Thanks so much,
Eileen Rullo
PWSA-NE, President