Ep17 Pulse 111: 15Q Day, Hope in Action, Trend Pain Report, Hyperphagia Study
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Description
The latest in PWSA events and PWS news in research, family support, and advocacy. Get a brief introduction to International 15Q Day and how you can help support PWSA | USA for our 2024 Angel Drive fundraiser. Other topics include the 2025 International PWS conference and FPWRs travel scholarship, Rare Aware Art Share birthday theme, our Hope in Action video series, a PWS Christmas party in the Pacific Northwest, PWS conference in Texas, Dorothea Lant's new appointment on RDLA advisory committee, Kristi and Justice Rickenbach's' feature in Soleno video, one family's story of how PWSA | USA helped them through a medical emergency, Ask Nurse Lynn's anesthesia response, upcoming webinar for Babysitter and Care Provider training, journaling and story sharing circle, Trend's new report on PWS and pain, a new site for Harmony TEMPO trial, study to measure hyperphagia, calls for Abstracts, upcoming ECHO 4 PWS webinar on Orthopedics and PWS, and our Holiday Gift Guide - Sensory Edition. Anne also shares what she has learned and appreciates about her first year of working with PWSA | USA.  LINKS Donate to our Angel Drive: Angel Drive 2024 - Prader-Willi Syndrome Association | USA International 15q Day - Prader-Willi Syndrome Association | USA Share your Spotlight on Hope: Share Your Story - Prader-Willi Syndrome Association | USA FPWR Travel Awards 2025 - IPWSO 2025 United in Hope Conference - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Hope in Action - YouTube PWSA of Washington and Oregon Christmas Party: vsheadel@gmail.​comor 360-609-5197 Texas Prader-Willi Association Conference: 713-253-9032Texas Prader-Willi Association Soleno Therapeutics "Our Stories": A Journey into Adulthood with Prader-Willi Syndrome (PWS) | Kristi & Justice's Experience PWSA | USA Hope in Action: A Lifeline for Families in Crisis - Prader-Willi Syndrome Association | USA Ask Nurse Lynn Blog: Ask Nurse Lynn: Anesthesia Concerns and Dental Procedure - Prader-Willi Syndrome Association | USA Submit your question for Nurse Lynn: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Babysitter and Care Provider Training Webinar: Webinar Registration - Zoom TREND Webinar PWSA Journal and Story Sharing Workshop: [email protected] TREND Pulse Report: PWS and Pain - Prader-Willi Syndrome Association | USA Harmony Biosciences Initiates TEMPO PWS Study - Prader-Willi Syndrome Association | USA Hyperphagia Study: Parent Consent FormHyperphagia-Study-Flyer.pdf Call for Abstracts: Conference 2025 - IPWSO ECHO 4 PWS Orthopedics and PWS webinar: Meeting Registration - Zoom Project Echo - Prader-Willi Syndrome Association | USA Holiday Gift Ideas: Sensory Edition - Prader-Willi Syndrome Association | USA    
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