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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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PWSA (USA)’s Webinar Series Continues

Prader-Willi Syndrome: Adulthood 101 With a presentation by Elizabeth Roof, M.A., on Monday, February 22, 2016, at 7:30 p.m., EST.  If you were unable to attend the 2015 conference, or missed this presentation while there, you will be glad to hear it now.  In Prader Willi Syndrome: Adulthood 101, Ms. Roof will present on supports […]

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Advocating for the Person with PWS in the Emergency Room

Dr. Dan Beaver, an ER physician with 30 years’ experience, and the parent of a child with PWS, will familiarize you with the ER process – the different kinds of staff you may meet and their roles, as well as provide you with strategies and resources you can use as you advocate for the person you […]

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ZAFGEN’S PIVOTAL PHASE 3 TRIAL OF BELORANIB IN PRADER-WILLI SYNDROME ACHIEVES CO-PRIMARY EFFICACY ENDPOINTS

Zafgen has released the results of the Phase 3 clinical trial of Beloranib in PWS (the “bestPWS” study). Note that PWSA (USA) and FPWR are planning a joint webinar in the next few days to review the findings and implications of the trial with the PWS community – more details will be available soon.   […]

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Introducing PWSA (USA)’s Phone App!

We are proud to announce our free PWSA (USA) phone app is now live and available on all mobile devices! In today’s world, the way we communicate and learn is through our mobile devices. We search, read, send emails, play and even work while using these devices. It has become a part of us. This […]

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