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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 […]

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Clint Hurdle’s Spring Training “Hot Stove” Dinner

Registration is now open for the 2nd Annual Hot Stove Dinner featuring Clint Hurdle, Manager of the Pittsburgh Pirates. Please join us for a great time and for a great cause! Cocktail hour/ Meet and greet with Clint Hurdle Get your photo taken with Clint Hurdle Dinner / Cash bar / Silent and live auction […]

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Play March Madness for PWS

Each March many of us play the office or neighborhood pool in hopes of making the big score and winning bragging rights for the next year.  This year you can make the big hit and help families affected by Prader-Willi syndrome deal with the many complications of living with PWS on a daily basis! The […]

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Special Webinar: Learn How You Can Help Transform the Lives of Those with Prader-Willi Syndrome!

Join us on Tuesday, March 22nd, 2016 1:00PM – 2:00PM EDT Learn about how PWSA (USA)’s services are helping families and loved ones and how YOU can help PWSA (USA) Save and Transform Lives with an eWalk or On The Move event! Featuring: Evan Farrar, Crisis Intervention and Family Support Counselor Bonnie Shelley, Coordinator of […]

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Crossover for Charity with Clint Hurdle!

Bradenton, Florida (March 8, 2016) – Clint Hurdle and Charity ArtworX are kicking off the 2016 Championship Season with Clint Hurdle’s crossover for charity CAXOpro Jersey (pronounced ‘KAX-O’ for Charity ArtworX Crossover). Charity ArtworX is offering promotional jerseys to community influencers interested in spreading the word about Clint Hurdle’s effort to raise awareness and support […]

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Prader-Willi Syndrome: Adulthood 101

Elizabeth Roof, M.A. will share her PWSA (USA) 2015 conference presentation. She will present on supports that seem to make things better as people with PWS get older, subtype differences, what to be on the watch for, and what you shouldn’t waste time doing! She will give some case studies about different psychiatric issues in […]

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Research Announcement: Report on the Zafgen Meetings

Due to the results of the phase 3 clinical trial on the Zafgen drug beloranib, a meeting was recently held in Miami to review the data and meet with thrombosis experts. This was followed up by a meeting with PWS caregivers, many of whom had children on the clinical trial. As reported in the webinar […]

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Clint Hurdle’s Hot Stove Dinner for PWSA (USA)

Clint Hurdle’s Spring Training “Hot Stove” Dinner for PWSA (USA) Bradenton, FL | Saturday, March 19, 2016 | @ Courtyard Bradenton Sarasota/Riverfront   Registration is now open for the 2nd Annual Hot Stove Dinner featuring Clint Hurdle, Manager of the Pittsburgh Pirates. Please join us for a great time and for a great cause! Cocktail hour/ Meet […]

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