PWSA (USA) had an awareness booth at the American College of Medical Genetics (ACMG) national meeting in Tampa Florida, March 8-12 2016. During this conference they had the first-ever symposium on a single syndrome (Prader-Willi syndrome) and had approximately 2,000 geneticists and genetic counselors attending. The symposium lasted 2 ½ hours with five speakers on PWS. What huge awareness! The moderators were Jennifer Miller*, M.D., and Christian Schaaf, M.D., PhD. It was a special time for us because Suzanne Cassidy*, M.D., also presented and received the Pruzansky Lecture award.
Dr. Cassidy provided an excellent overview and explained the importance of PWSA (USA) for education and support services. She recommended people stop by our booth and get the flash drive we were distributing free that had a tremendous amount of information on the syndrome – booklets, brochures, and articles. We heard very positive comments on the presentations at the symposium, and their amazement at the amount of services provided by our organization.One physician stated that PWSA (USA) should be the prototype for every rare disease organization. We were swamped at our booth and ran out of the flash drives, had more made quickly at the office, and ran out again! We also distributed other information, including the new Medical Alert booklet, and promised those who did not get a flash drive that we would send them the information. PWSA (USA) was mentioned 18 times in the program booklet – further great awareness.
Carolyn Loker helped me host the booth for the first time, and told me that after all these years, she now truly understood the importance of doing these educational booths at major medical conferences. Although we are worn out by the end, the enthusiasm of interacting with hundreds of specialists who will ultimately make a difference in the care they give to our children thanks to the information we distribute, keeps you on a high throughout the entire conference. Carolyn also got to experience how special it feels to help physicians from other nations that have little information on the syndrome.
PWSA (USA) recently had another major educational effort by mailing 1,041 packets of information on the syndrome to PWS clinics, geneticists and genetic counselors around the nation. A special thank you goes to Pfizer for funding this massive educational effort.
The above are just two more examples of how PWSA (USA) is saving and transforming lives – and why I am so proud to be a part of this wonderful organization.
*PWSA (USA) advisory board members
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.