PWS United

By PWSA | USABusiness Education Non-Profit

PWS United episodes

March 11, 2025 Ep32Pulse 118: Harmony Webinar, Hot Stove Dinner, State Advocacy, TREND GI Report, Community Publications
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
Events
United in Hope Conference
Hotel Locator: PWSA (Prader-Willi Syndrome Association) | 2025 International Prader-Willi Syndrome Conference - 6/24/25 - 6/28/25 - Phoenix, AZ | Tempe | Advanced Reservation Systems
Home - 2025 United in Hope PWS Conference
Mural: 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA
For info on sponsorship opportunities: [email protected]
50th Anniversary
Journey of Hope Gala: PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Other Events
BIPOC Listening Sessions: Listening Session: Prader-Willi Syndrome
Fundraisers
Prader-Willi Hot Stove | Powered By GiveSmart
Zahra's Night of Light - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
United for Change: PWSA | USA Advocates Make a Powerful Impact During Rare Disease Week 2025 - Prader-Willi Syndrome Association | USA
Call to Action for Illinois Families: Witness Slip
Illinois General Assembly - Full Text of HR0173
Family Support
Her Own Home with Family Nearby - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Interventions for Rectal Picking - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA
I Am Full – Stories for Jacob Book Club Discussion: [email protected]
Research
TREND Report: Gastrointestinal Issues in the PWS Community - Prader-Willi Syndrome Association | USA
New Project Seeks to Identify Characteristics that Predict Challenging Behaviors in PWS - Prader-Willi Syndrome Association | USA
Harmony Biosciences Initiates TEMPO PWS Study - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
Call for Nominations or Board of Directors
mailto:[email protected]
LisaGrazianoLMF[email protected]
Community Publications - Prader-Willi Syndrome Association | USA

Intro Music: https://www.bensound.com/; License certificate #2242442
46 min
March 04, 2025 Ep31 PWS Awareness Starts Here: Fundraising with Hope United & United We Brunch
On today's episode, we’re diving into the power of peer-to-peer fundraising through PWS Hope United—PWSA | USA’s platform that lets community members create fundraisers that fit their passion and comfort level.
From simple online fundraisers to large-scale in-person events, PWS Hope United provides opportunities for anyone to raise critical funds that support our family services, advocacy efforts, and groundbreaking research for PWS.
This episode features interviews with members of PWSA | USA's Development Team to talk about how you can get involved in PWS Hope United. We're also joined by board member and PWS mom Kat Lucero, who has had success with online fundraising and is excited to help launch a brand-new in person fundraising campaign for PWS Awareness Month - "United We Brunch." And finally, Michele Hampton, a dedicated PWS mom shares her experience hosting the Dance Silly for Prader-Willi event.
Whether you’re looking for inspiration to start your own fundraiser or just want to hear some incredible stories of community support, this episode is for you.
Episode Links:
PWS Hope United Website: https://give.pwsausa.org/campaign/pwsa-fundraising-pages/c642678
United We Brunch Website: https://give.pwsausa.org/campaign/united-we-brunch/c664218
United We Brunch Toolkit: https://www.pwsausa.org/wp-content/uploads/2025/03/UNITED-WE-BRUNCH-TOOLKIT.pdf
Zahra's Night of Light Website: https://give.pwsausa.org/event/zahras-night-of-light/e640509
PWSA | USA's Events Page: https://www.pwsausa.org/events/
Dance Silly for Prader-Willi Event Page: https://www.pwsausa.org/events/dance-silly-for-prader-willi/

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

1 hr 33 min
February 25, 2025 Ep30 Pulse 117: Commitment to Advocacy, Rare Disease Week, 50th Gala Tickets, Calls to Action
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
Events
Rare Disease Day
Rare Disease Day Hub: PWS - Rare Disease Day - Prader-Willi Syndrome Association | USA
Rare Disease Week - EveryLife Foundation for Rare Diseases
Live Stream: Rare Disease Week - Attendee Corner Virtual Rare Disease Week - EveryLife Foundation for Rare Diseases
Rare Disease Day 2025 – Join Us!
Rare Disease Week Advocacy Calls to Action: Join Rare Disease Week Advocacy from Home - Prader-Willi Syndrome Association | USA
United in Hope Conference
Hotel Locator: PWSA (Prader-Willi Syndrome Association) | 2025 International Prader-Willi Syndrome Conference - 6/24/25 - 6/28/25 - Phoenix, AZ | Tempe | Advanced Reservation Systems
Home - 2025 United in Hope PWS Conference
Mural: 2025 PWS Conference Mural Photo Submission - Prader-Willi Syndrome Association | USA
For info on sponsorship opportunities: [email protected]
50th Anniversary
Journey of Hope Gala: Donate to Diamonds & Denim 2025
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
BIPOC Listening Sessions: Listening Session: Prader-Willi Syndrome
Fundraisers
Prader-Willi Hot Stove | Powered By GiveSmart
PWSA Fundraising Pages - Campaign
Spotlight on Hope
New Mexico teen receives national acclaim for Girl Scout Gold Award project - KOB.com
Share Your Story - Prader-Willi Syndrome Association | USA
Call to Action!
Call to Action: Save Our Clinical Trials - Prader-Willi Syndrome Association | USA
Advocacy
Aardvark Therapeutics Rings the Closing Bell | Nasdaq
Family Support
Celebrating National Caregivers Day 2025 - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Memory, Confabulation, and Aging in PWS - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA
Research
New Project Seeks to Identify Characteristics that Predict Challenging Behaviors in PWS - Prader-Willi Syndrome Association | USA
Twins & Prader-Willi Syndrome Survey
Announcements/Resource Spotlight
Call for Nominations or Board of Directors
mailto:[email protected]
LisaGrazianoLMF[email protected]
Raise-Your-Voice-Toolkit-PWSA-USA-Revised-Version-2021.pdf

Intro Music: https://www.bensound.com/; License certificate #2242442
39 min
February 18, 2025 Ep 29: Pioneers in PWS - Residential Care and the Professional Providers Advisory Board
Introducing Pioneers in PWS, a new podcast series from PWS United in honor of PWSA | USA's 50th Anniversary!

Before there were conferences, support groups, or even a central source of information on Prader-Willi syndrome, there were pioneers. Parents, professionals, and advocates who built the foundation of the PWS community—one connection, one breakthrough, one act of determination at a time. In honor of PWSA | USA’s 50th anniversary, we’re diving into their stories. Pioneers in PWS was originally a PWSA | USA blog series produced in 2021 by our dedicated volunteers. Throughout 2025, we'll look back on these articles to explore where we’ve been, how far we’ve come, and recognize the pioneers who made it possible.

With National Caregivers Day falling on February 21st, we’re kicking off the series with a look back at the formation and impact of the Professional Providers Advisory Board. Since 2008, this group has been instrumental in shaping best practices for residential care providers supporting individuals with Prader-Willi syndrome. Join us as we revisit the history and evolution of this essential advisory board with two special guests: Jeff Covington, a founding member of the board and former co-chair (2012-2014), and Stacy Ward, CEO of PWSA | USA. Together, they’ll share their insights on the challenges, milestones, and lasting impact of the board’s work in improving residential care and training for professional providers worldwide.

Episode links:
Original Pioneers in PWS blog article - https://www.pwsausa.org/pioneers-devoted-to-educating-and-supporting-residential-care-and-education-professionals/
Technology Supports: https://www.pwsausa.org/resources-a-z/technology-supports/
Best Practice Guidelines for Standard of Care in PWS: https://ipwso.org/wp-content/uploads/2020/10/PWS-Best_Practice_Guidelines.pdf
2025 International PWS Conference (Register to attend this year's Professional Providers Conference): https://pwsausaevents.cventevents.com/event/04353c7a-d6b1-45f9-9d6f-48acda9cd07e/home
PWSA | USA's 2024 Residential Providers Conference Recap: https://www.pwsausa.org/residentialprovidersconference/

Intro Music: https://www.bensound.com/; License certificate #2242442
54 min
February 11, 2025 Ep28 Pulse 116: Growth Hormone Pioneer, Advocacy Wins, TREND Report on Behavior, Job Announcement
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
Events
Hotel Reservations: Arizona Grand Resort & Spa - Reservations - Room Availability Search
Hotel Locator: PWSA (Prader-Willi Syndrome Association) | 2025 International Prader-Willi Syndrome Conference - 6/24/25 - 6/28/25 - Phoenix, AZ | Tempe | Advanced Reservation Systems
Home - 2025 United in Hope PWS Conference
For info on sponsorship opportunities: [email protected]
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Prader-Willi Hot Stove | Powered By GiveSmart
Donate to Diamonds & Denim 2025
PWSA Fundraising Pages - Campaign
Rare Disease Day 2025 – Join Us!
Spotlight on Hope
Spotlight on Hope: Cam, PWS Warrior - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
PWS United
PWS United Podcast - YouTube
Advocacy
Victory for the PWS Community in Illinois - Prader-Willi Syndrome Association | USA
Illinois General Assembly - Bill Status for SB1651
Illinois General Assembly - Bill Status for HB2541
[email protected]
Rare Disease Advisory Council - Frequently Asked Questions - National Organization for Rare Disorders
Find your State Legislator: p2a.co/O6Zyn8Q
Family Support
Steps Toward More Independent Living - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA
Research
TREND Report on PWS and Emotional and Behavioral Patterns: 2025_1_31_FINAL_PWS_Report_3.pdf
Harmony Biosciences Initiates TEMPO PWS Study - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
PWSA | USA Employment - Prader-Willi Syndrome Association | USA
Stacy Ward email for resume: [email protected]
Resources A-Z: Behavior - Prader-Willi Syndrome Association | USA

Intro Music: https://www.bensound.com/; License certificate #2242442
39 min
February 04, 2025 Ep27: Advocacy with Terry Wilcox from Patients Rising
Terry Wilcox is the co-founder and CMO of Patients Rising, the "leading grassroots patient advocacy organization seeking comprehensive policy solutions that puts the patient experience at the forefront of addressing America’s biggest healthcare access challenges." Terry sat down with our Director of Community Engagement, Dorothea Lantz, to talk about patient advocacy on state and federal levels, the importance of rare disease groups advocating together, and tips to keep in mind when advocating with representatives.
Links:
Patient Advocacy Platform | Patient Empowerment | Patients Rising
How a Hospital Chain Used a Poor Neighborhood to Turn Huge Profits - The New York Times
How a Company Makes Millions Off a Hospital Program Meant to Help the Poor - The New York Times

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

47 min
January 28, 2025 Ep26: Clinical Trial Perspectives Part 1
Justice and Kristi Rickenbach, along with Jennifer Andrews, sat down with Anne Fricke to share their experiences and perspectives on participating in Harmony Biosciences' pitolisant clinical trial. Pitolisant is being tested for its efficacy in treating excessive daytime sleepiness in individuals with PWS. They discuss what brought them to this particular trial, details and logistics, the importance of participating in a clinical trial and research, and life before and after enrolling. PWSA | USA would like to clarify that this clinical trial is one of several available in the PWS community and future episodes will cover some of these. To learn more and find clinical trials that might be a fit for your family, please visit Clinical Trials - Prader-Willi Syndrome Association | USA

Intro Music: https://www.bensound.com/; License certificate #2242442
51 min
January 21, 2025 Ep25 Pulse 115: Countdown to Conference, Hot Stove Dinner, Changes at FDA, Volunteer Spotlight, Sertraline
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
Events
Hotel Reservations: Arizona Grand Resort & Spa - Reservations - Room Availability Search
Home - 2025 United in Hope PWS Conference
For info on sponsorship opportunities: [email protected]
PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA
Prader-Willi Hot Stove | Powered By GiveSmart
Diamonds & Denim 2025 - Campaign
PWSA Fundraising Pages - Campaign
Announcements/Resource Spotlight
PWSA-Emergency-Preparedness-Checklist.pdf
Growth-Hormone-booklet-third-Edition_FINAL.pdf
Spotlight on Hope
Spotlight on Hope: Overcoming What Feels Impossible - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
Changes at FDA’s Center for Drug Evaluation and Research - Prader-Willi Syndrome Association | USA
Family Support
Volunteer Spotlight | Leadership and Vision: More Than 20 Years of Service - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Determining Appropriate Setraline Dose - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Share Your "PWS in Adulthood" Story - Prader-Willi Syndrome Association | USA
Research
Trial Transitions and Testimonials - Prader-Willi Syndrome Association | USA
Call for Abstracts: Conference 2025 - IPWSO

Intro Music: https://www.bensound.com/; License certificate #2242442
39 min
January 14, 2025 Ep24 TREND & PWS Connect
This episode is an edited recording of a past webinar explaining how parents can help advance PWS research while also finding and building community support. PWS parents Maria Picone and Chris DeFelice shared how their personal journey with PWS led them to create the PWS Connect channel on Discord, a place where caregivers come together to share their journeys, experiences, questions, and advice to support each other and directly impact the progression of PWS research. This episode explains the What, Why, and How of TREND Community and the PWS Connect Discord group. Join PWS Connect on Discord for a new wave of PWS insights and growing research! Join PWS Connect on TREND below.
TREND Connect
PWSA-Emergency-Preparedness-Checklist.pdf

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

59 min
January 07, 2025 Ep 23 Pulse 114: Celebrating 50 Years of Hope, Advocacy Class, PWSA Egypt, Journeys Project on Discord, Community Stories
Listen to the latest in PWSA events and PWS news: how to help us celebrate our 50th Birthday year in 2025 at the Journey of Hope Gala and our 50th birthday party at the International PWS conference in June, a young artist's Spotlight on Hope, call for Rare Aware Art Share submissions, Diamonds and Denim fundraiser, the upcoming PWS Advocacy master class, PWSA Egypt, Nurse Lynn's response for a late diagnosis and newborn screening, the new Journeys project on PWS Connect on Discord, call for abstracts for Clinical and Scientific Program, our Parent/Family Mentor Program, and of course, Carrie and Anne's latest mission moments.
Emails:
Dorothea Lantz, Community Engagement Director - [email protected]
Jim Sliney at Patients Rising - jsliney@patientsrising.org
[email protected]
Events
Celebrating 50 Years of Hope: Ushering in PWSA | USA’s Anniversary Year - Prader-Willi Syndrome Association | USA
PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA
Home - 2025 United in Hope PWS Conference
Diamonds & Denim 2025 - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Spotlight on Hope: Lenny's Business Fair Breakthrough - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
PWS Advocacy Master Class Sign up | Patient Rising Community
Family Support
A Global Network of Hope: How PWSA Egypt & Middle East is Transforming Lives - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Late Diagnosis and Newborn Screening - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Call for Abstracts:
Conference 2025 - IPWSO

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

About PWS United

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Welcome to PWS United, a podcast for the Prader-Willi Syndrome community, brought to you by PWSA | USA.

This podcast gives the latest news in research, advocacy, and family support by bringing…

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