PWS United
PWS United
PWSA | USA
Ep22 Pulse 113: Marathon Runner, Inclusive Advocacy, Art Share Extension, PWS in Adulthood, The Holidays
34 minutes Posted Dec 24, 2024 at 11:30 am.
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Show notes
In this Pulse episode, Carrie and Anne discuss the holidays, the upcoming close of Angel Drive, Stacy's message of gratitude and progress, a young marathon runner with PWS, Rare Aware Art deadline, 2025 International conference, Hot Stove save the date, Inclusive Advocacy in Action, James and Elaine Towle's "Our Stories" video, year-end highlights for advocacy, the latest PWS in Adulthood blog, an Ask Nurse Lynn question about Lorazepam, international book award for Destiny Pacha, call for abstracts for Clinical and Scientific program, ECHO webinar library, our blog on traveling with medication, and an expression of our gratitude for the PWS community and those who have listened, reviewed, and supported the PWS United podcast as we continue this initiative. Happy Holidays to all the PWS families and beyond!
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LINKS
Angel Drive 2024 - Prader-Willi Syndrome Association | USA
Hope in Action: A Message of Gratitude and Progress from PWSA | USA
PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA
Home - 2025 United in Hope PWS Conference
Spotlight on Hope
Klara on the Run - Prader-Willi Syndrome Association | USA
Advocacy
Empowering Change: Inclusive Advocacy in Action - Prader-Willi Syndrome Association | USA
Jim's Adult Journey with Prader-Willi Syndrome
Advocating for Rare Diseases: Year-End Highlights and Uncertain Next Steps - Prader-Willi Syndrome Association | USA
Family Support
Managing Living Situations - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Tapering Lorazepam - Prader-Willi Syndrome Association | USA
Embracing Differences | The Journey Behind "It Starts With Hello: Katie’s Story About Prader-Willi Syndrome" - Prader-Willi Syndrome Association | USA
Research
FDA Extends Review Period for DCCR: What It Means for the PWS Community - Prader-Willi Syndrome Association | USA
Call for Abstracts: Conference 2025 - IPWSO
PWSA | USA ECHO 4 PWS - YouTube
Resource Spotlight
How To Travel with Refrigerated Medication - PWSA USA