Hello All,
On June 8th newly formed PWSA-NE board had their first meeting. Though the school year is winding down and many of us can only dream of the much slower pace of summer vacation, there was a definite energy and excitement at the meeting as we began to formulate some new ideas and plans for the up coming year.
We hope to host a casual, low cost social event in September. The idea of a dance for the kids seemed to appeal to all. A college kid volunteering to be the DJ, a chance for the kids to dance, and the parents can mingle sounded like a manageable social event. We will be looking for raffle prizes to be donated to raise some funds for the Chapter.
Two members are formulating a Crisis Protocol. This protocol will outline the essential steps a parent, school or care giver would take in the event a behavioral crisis took place. Karen Levine, a well known psychologist with years of experience with the PWS, has volunteered to consult on this effort.
Other events for the year are in discussion as well. We hope to offer a "mini conference" sometime in the fall. Members present at the meeting had ideas of different topics and speakers they thought would appeal to our group. A focus group is going to examine DMR's role and how this organization impacts kids with PWS.
The New England Chapter covers a large geographical area. We are sensitive to the fact that a Boston based meeting does not easily accommodate those in the western Massachusetts or in parts of New Hampshire or Maine. We completely support the notion of small groups of families gathering to support each other, share ideas and socialize. Please, if you do gather and meet, send in a small description to the new website. The chapter is looking to hear from every family, from every corner of New England. From time to time, check out the newly revised Prader Willi Syndrome Association of New England's web site. It is frequently being updated.
Our next board meeting is September 14th at Franciscan Children's Hospital. We would love you to join us.
Until then, please enjoy a safe summer season with family and friends.
Take care,
Eileen Rullo
PWSA-NE, President
