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A NOTE FROM
THE CHAIRMAN OF
THE PWSA (USA) BOARD
~John
Heybach, Ph.D.
The PWSA (USA) Board of Directors recently
completed two full days of meetings in Bradenton, Florida, at Pirate City, the
spring practice facility of the Pittsburgh Pirates. We are grateful to Clint
Hurdle, manager of the Pirates and father of Madison, age 9 with PWS, for his
continued support of PWSA (USA). This is an excellent meeting location, and we
appreciate the opportunity to utilize it.
During our meetings on April 13 and 14, we
approved the budget for the 2012 Hyperphagia Conference to be held October
17-20, 2012, in Baton Rouge, Louisiana. More information on the conference can
be found on our Web site.
In other business, PWSA (USA) is pleased to announce the appointment of
Dottie and Dale Cooper as Interim Executive Directors of the PWSA (USA) national
office. The Coopers attended the board meeting and are fully up to speed and
ready to handle the duties associated with the day-to-day operation of the
national office.
Along with years of
experience building and leading teams in the corporate world, Dottie and Dale
bring to this position a lifetime of experience raising a son and a daughter
(Shawn Cooper, 38 with PWS, who currently serves on the PWS Advisory Board).
Over the years, the Coopers have been actively engaged with PWSA (USA). They
led the efforts to host two regional PWS conferences in Birmingham, Alabama, and
served as State Chapter president when Georgia established a group home for
persons with PWS and hosted the 1994 PWSA (USA) National Conference. More
recently, the Coopers collectively have tenure on both state and national boards
of directors. Currently they are working with Emory University to establish a
PWS clinic and are on the organizing committee for the 2nd
International Conference on Hyperphagia in October. In their own words,
“This is our Association. PWSA has been there for us all these years, and this
is our opportunity to give back to the families, chapter leaders, medical
professionals and providers who are all a part of our support group. We are
honored to join the outstanding team of professionals in the National Office.”
We recognize that for many of our families Janalee Heinemann was the
face of the organization-- -understandably so since she was Executive Director
for 11 years. Both before and after her time of service, there have been
periods of transition and multiple Executive Directors serving within a
several-year period. But for 35 years PWSA (USA) has been here for our
families. And the organization will continue to be here for the PWS community
through this period of transition and growth–evolving to meet the needs of
increased awareness and early diagnosis, increased research and new developments
in many areas. Just as the syndrome is complex (as all know who deal with it
daily), finding the appropriate person to lead the Association in the future is
a complex process. Be assured that the Board of Directors of PWSA (USA) is
committed to this process and to the continued success of our organization.
Finally, I am pleased to inform you that similar to the current cooperative
efforts around research, the boards and staffs of PWSA (USA) and the FPWR are
also continuing to explore additional ways to expand working together and to
build a closer relationship going forward.
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Edited:
05/02/2012
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