Ep70 Pulse 136: In Memory of Fausta, Give Kids a Chance Act, HERO Study Expansion, PWS Relationsh...

Описание: The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 



24 Hour Crisis Line: 941-312-0400



In Loving Memory of Fausta Deterling, Co-Founder of PWSA | USA - Prader-Willi Syndrome Association | USA (https://www.pwsausa.org/in-loving-mem...)



Angel Drive



Angel Drive 2025 - Prader-Willi Syndrome Association | USA (https://www.pwsausa.org/angel-drive-2...)



Stacy’s Thank You Message (   • Thank You for Supporting PWSA | USA this G...  )



Hope in Action: Carol's Story (   • Hope in Action: Building Hope, One Generat...  )



PWSA Memory



1997_Vol-XXII-N4-Sept-1997.pdf (https://www.pwsausa.org/wp-content/up...)



Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA (https://www.pwsausa.org/50-year-anniv...)



Events | Fundraisers



Claus for a Cause Thank You Message (   • Claus for a Cause Thank You Message  )



PWSA Fundraising Pages - Campaign (https://www.classy.org/campaign/pwsa-...)



Spotlight on Hope



Spotlight on Hope: Sharon, Leora Saacks Share Loved One Andrea's Journey with PWS - Prader-Willi Syndrome Association | USA (https://www.pwsausa.org/spotlight-on-...)



Share Your Story - Prader-Willi Syndrome Association | USA (https://www.pwsausa.org/get-involved/...)



Podcast



Ep69: Joe Gill: Inclusion, Purpose, and the Little Things | PWS United (https://pwsunited.podbean.com/e/ep69-...)



Advocacy



A Milestone for Hope: U.S. House Passes the Give Kids a Chance Act - Prader-Willi Syndrome Association | USA (https://www.pwsausa.org/a-milestone-f...)



Family Support



Reflections from PWSA | USA’s Visit to PANTHERx Rare Pharmacy - Prader-Willi Syndrome Association | USA (https://www.pwsausa.org/reflections-f...)



Adoption Spotlight for Santino, contact: [email protected] (mailto:[email protected]) or 412-441-4484



Ask Nurse Lynn: Testosterone and Low LH - Prader-Willi Syndrome Association | USA (https://www.pwsausa.org/ask-nurse-lyn...)



Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA (https://www.pwsausa.org/ask-nurse-lynn/)



Research



HERO Study for Treatment of Hyperphagia in PWS (https://www.heroforpws.com/)



PWS-PARTICIPANTS-NEEDED.pdf (https://www.pwsausa.org/wp-content/up...) Flyer for adult with PWS relationship study



Pre-screening Survey (https://redcap.vumc.org/surveys/?s=TD...) for adults with PWS for relationship study



New Research Study Seeks Caregiver Insights on Hyperphagia in PWS - Prader-Willi Syndrome Association | USA (https://www.pwsausa.org/new-research-...)    



Eligibility Screening for Hyperphagia study: survey.alphadetail.com/wix/5/p867000759655.aspx?refby=medp (https://survey.alphadetail.com/wix/5/...)



Screening Questionnaire for the Study Titled: The Effects of a Caregiver-Implemented Power Card Strategy on Social Play Skills in Children with Prader-Willi Syndrome | QuestionPro Survey (https://pwslab.questionpro.com/a/Take...)



Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA (https://www.pwsausa.org/prader-willi-...)



Announcements/Resource Spotlight



Holiday Gift Ideas: Sensory Edition - Prader-Willi Syndrome Association | USA (https://www.pwsausa.org/holiday-gift-...)



 



Intro Music: https://www.bensound.com/  License certificate #2242442