Tuesday Nov 19, 2024
Ep17 Pulse 111: 15Q Day, Hope in Action, Trend Pain Report, Hyperphagia Study
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
PWSA of Washington and Oregon Christmas Party: vsheadel@gmail.comor 360-609-5197
Texas Prader-Willi Association Conference: 713-253-9032
Texas Prader-Willi Association
Soleno Therapeutics "Our Stories": A Journey into Adulthood with Prader-Willi Syndrome (PWS) | Kristi & Justice's Experience
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
Journal and Story Sharing Workshop: africke@pwsausa.org
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 Form
Hyperphagia-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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