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This podcast gives the latest news in research, advocacy, and family support by bringing together staff, volunteers, PWS treatment specialists, biotech and pharmaceutical representatives, caregivers, family members, and individuals with PWS. Our goal is to connect education, awareness, and resources with those living with PWS and their supporters. Join us in our mission to enhance the quality of life and empower those affected by Prader-Willi syndrome.
Episodes
2 days ago
2 days ago
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
Awareness Topics
Nutrition in the PWS Family - Prader-Willi Syndrome Association | USA
Nutrition Discourse in the PWS Community - Prader-Willi Syndrome Association | USA
2025 DD Awareness Month: We’re Here All Year! – NACDD
Women in PWS: Moving Forward Together - Prader-Willi Syndrome Association | USA
What is neurodiversity? - Harvard Health
Neurodiversity and Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA
United in Hope Conference
High-Level 2025 Conference Schedule
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: PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign
PWSA Memory: Vanja Holm's contribution to our knowledge of PWS - IPWSO
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
Recognizing and Addressing Hyperphagia Early in Prader Willi Syndrome
Fundraisers
Zahra's Night of Light - Campaign
United We Brunch - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
Take Action: Help Pass the Sunshine Genetics Act in Florida! - Prader-Willi Syndrome Association | USA
Soleno Sibling/Family Member Stories: stories@soleno.life
Soleno Caregiver Photo & Story Release Form (for minor siblings) Feb 2025.docx
Soleno Adult Sibling Photo & Story Release Form Feb 2025.docx
Family Support
Staying Cool at Conference - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Respiratory Infections - 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
Tirzepatide Study: EndocrineResearch@seattlechildrens.org or 206-987-2540
PWSA | USA Webinar: About Harmony Biosciences TEMPO PWS Clinical
Announcements/Resource Spotlight
What is Early Intervention?
Tuesday Mar 18, 2025
Tuesday Mar 18, 2025
PWSA | USA’s CEO Stacy Ward sat down with educator and IEP coach, Jamilah Bashir to discuss special education and the state of the Department of Education. They discussed training for special education teachers, the voucher program, where to find good information about changing policies and decisions within the Department of Education, and the path of an executive order. Jamilah clarified the different roles of the U.S. Dept. of Ed. versus the state’s Dept. of Ed., focusing on funding and the accountability of states to provide services. This discussion can provide clear insight on the role of the U.S. Department of Education, why it may be critical for our loved ones with PWS, what the alternative (ie voucher programs and private schools) may look like, and how and why to contact your representatives on this issue.Jamilah Bashir has over 20 years’ experience serving as a special education teacher, special education supervisor, and education consultant across charter, public, and private schools. She has two master’s degrees—one in Education and another in Educational Leadership—from St. Joseph’s University. She is the founder of The IEP Coach LLC, a company dedicated to empowering special education teachers, schools, and parents. Jamilah is a speaker and thought leader and has presented at conferences such as the 2024 Autism in Black Conference and spoken on podcasts like The Impact of Educational Leadership with Isaiah Drone and The Opportunity Gap by Understood.org. She is also the author of Because of H.E.R., a memoir about her experience of growing up with a sibling with a disability. She created resources and programs like the Master the IEP Course and SPEDucators Rise. Jamilah connects with over 7,000 people weekly through her live series The Coaching Corner with the IEP Coach on social media.
We want to extend a huge thank you to Jamilah for sharing her knowledge of the special education system and we hope this helps families better understand the current landscape of the Department of Education.
LINKS
Website: www.theiepcoachllc.com
Master the IEP Course: www.mastertheiep.com
SPEDucators Rise Coaching Program: https://www.theiepcoachllc.com/speducators-rise-program
Freebies: https://www.theiepcoachllc.com/freebies
Instagram: Jamilah F. Bashir (@theiepcoachllc) • Instagram photos and videos
Tuesday Mar 11, 2025
Tuesday Mar 11, 2025
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: development@pwsausa.org
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: dan_yashinsky@hotmail.com
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:sward@pwsausa.org
LisaGrazianoLMFT@gmail.com
Community Publications - Prader-Willi Syndrome Association | USA
Tuesday Mar 04, 2025
Tuesday Mar 04, 2025
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/
Tuesday Feb 25, 2025
Tuesday Feb 25, 2025
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
LisaGrazianoLMFT@gmail.com
Raise-Your-Voice-Toolkit-PWSA-USA-Revised-Version-2021.pdf
Tuesday Feb 18, 2025
Tuesday Feb 18, 2025
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/
Tuesday Feb 11, 2025
Tuesday Feb 11, 2025
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
Tuesday Feb 04, 2025
Tuesday Feb 04, 2025
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
Tuesday Jan 28, 2025
Tuesday Jan 28, 2025
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
Tuesday Jan 21, 2025
Tuesday Jan 21, 2025
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