A Massive PWS Awareness Campaign for Geneticists

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

Janalee Heinemann, MSW
Coordinator of Research & International Affairs
Prader-Willi Syndrome Association (USA)

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