"Moo-ving Forward" from Milwaukee

Over 400 people, including more than 100 volunteers, attended the 30th Annual PWSA (USA) National Conference in Milwaukee, Wisconsin, July 2-4, 2008. After Scientific and Providers conferences and Chapter Presidents Day on Wednesday, July 2, the general conference opened Thursday in an emotion-filled session with Richard Pimental, one of the leaders in forging the Americans with Disabilities Act. His personal story, portrayed in the movie Music Within, brought us all near to tears as he combined memories, history, and humor to illustrate the power of love.

“Most people go to their graves with the music still inside them,” Oliver Wendell Holmes, quoted by Richard Pimentel


Concurrent sessions spanned scientific, therapeutic, educational, residential, familial, and behavioral topics. Families and friends shared a Gala that featured a silent auction and hip-hop music by The Figureheads, a nonprofit musical group that thrilled both dancers and listeners with their audience interaction and positive message.

" The atmosphere was festive and the food was very good. Although RAP is not my favorite type of music, the Figureheads were 'awesome'!"

Conference Co-Chairs Barb and Don Dorn, Mike and Mary Lynn Larson, and Chad and Melissa Sirovina led a large contingent of Wisconsin Chapter members planning and executing diverse conference activities including a Youth and Infant Program (YIP) serving 32 children 5 and under. Many thanks go to all for their hard and successful work!

"….. the conference was a great experience for myself and my daughter."

At the annual business meeting, Dr. Merlin Butler, Chair of the PWSA (USA) Scientific Advisory Board who has recently moved to the Kansas University Medical Center, received a special award for distinguished service to the PWSA community. Speaking from the floor, long-time member and past president Dr. Delfin Beltran reminded attendees of PWSA (USA)’s founding and spoke of the tremendous growth of PWSA programs and membership since then.

"I thought that [Janalee] did an absolutely super job summarizing the PWSA sponsored research projects for families… tone was just right, and the content was conveyed in a straightforward, honest and upbeat way that families could readily appreciate and understand. Thank you!"

Friday’s sessions included sensory integration, Individualized Education Programs, behavioral techniques, and residential service models, plus focused sharing sessions. An extended Health Update session permitted parents to ask Drs. David Agarwal, Jennifer Miller, and Ann Scheimann questions. As other medical and behavioral experts in the audience chimed in, this session vividly illustrated the value of the PWSA (USA) conference as the world’s largest gathering of family, friends, and professionals concerned with PWS.

"A terrific conference. I was telling my wife that I have so many of those "spine tingling" moments at the PWS conference, I'm just so moved by the warmth, support and drive that this group has, and the many caring people who are members. As always, I'm proud to be associated." ~Harold Van Bosse, M.D., member of the Scientific Advisory Board

At the closing session, participants thanked Conference Coordinator Kerry Headley, who is leaving that position to join the PWSA (USA) Board. Executive Director Craig Polhemus , in a quick summary of Chapter activities, said, "I hope you find that joining together in Chapters and support groups repays your investment of energy with information, companionship, and inspiration that can help carry you through those long, challenging days when you feel all too alone. And give our email support groups a try as well – I’ve never seen a more active, supportive group of parents. We are many, yet we are one.”

Led by two friendly "cows", the YIP participants marched in to close the Conference. Linda Gourash, Janet Forster, and Carol Hearn reprised their conference-opening number, Gotta Keep on Moo-Ving, giving a burst of energy that lasted well past the end of the session.

"The conference turned out absolutely fantastic!"
 
                     

 

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