PWS United

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: development@pwsausa.org
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:sward@pwsausa.org
LisaGrazianoLMF​T@gmail.com
Raise-Your-Voice-Toolkit-PWSA-USA-Revised-Version-2021.pdf

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/

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: development@pwsausa.org
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
advocacy@pwsausa.org
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: sward@pwsausa.org
Resources A-Z: Behavior - Prader-Willi Syndrome Association | USA

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
 

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

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: development@pwsausa.org
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

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
 

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 - dlantz@pwsausa.org
Jim Sliney at Patients Rising - jsliney@patient​srising.org
info@pwsausa.org
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

Ep22 Pulse 113: Marathon Runner, Inclusive Advocacy, Art Share Extension, PWS in Adulthood, The Holidays

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!
Emails:
Join BIPOC Affinity Group: BIPOCPWS@gmail.com
Share PWS in Adulthood Blogs: africke@pwsausa.org
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

Ep21 Meet the PWSA | USA Staff

Meet the PWSA | USA staff! In this episode, listeners get a behind-the-scenes glimpse of the dedicated staff as we answer questions about what we do for the organization, what we love about working for PWSA and the PWS community, what we think you all need to know about what we offer, where would Carrie travel to tomorrow, what skills does Anne wish she had, what is one (of many) of Dorothea's most memorable moments on Capitol Hill, and who does Stacy prefer - individuals with PWS or their parents? We hope you enjoy getting to know the staff and the organization as we wrap up 2024 and head into our 50th Anniversary year!
LINKS
2025 United in Hope Conference - Prader-Willi Syndrome Association | USA