PWS United

Ep51 ADA History and Advocacy

On this week’s episode of PWS United, we celebrate the 35th Anniversary of the signing of the Americans with Disabilities Act (ADA). The ADA has been monumental in protecting individuals with disabilities from anti-discrimination legislation and ensuring the legal rights of individuals with disabilities to live, work, and receive services in our society.
In our discussion of the ADA, we dip briefly into the history of the modern disability rights movement that led up to the signing of the ADA, from the League for the Physically Handicapped in 1936, to Judy Heumann and the 20 day protest in 1977 that led to the late enactment of Section 504 of the Rehabilitation Act of 1973, to the inspiring Capital Crawl of 1990 just months before President Bush signed the ADA.
We invited Dorothea Lantz, PWSA’s Director of Community Engagement and mom to Hunter (8, living with PWS) on to the podcast to help us better understand how HR1 may affect Medicaid, the importance of getting involved in advocacy on a state level, and to encourage our community to join in our latest advocacy efforts.
Share your Medicaid story: Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy email: advocacy@pwsausa.org
Medicaid-Fact-Sheet-1.pdf
PWSA \ USA’s Advocacy webpage: Advocacy & Awareness - Prader-Willi Syndrome Association | USA
Introduction to the Americans with Disabilities Act | ADA.gov
2024 PWSA | USA D.C. Fly-In Documentary - YouTube
The Road to the Americans with Disabilities Act (ADA) - Prader-Willi Syndrome Association | USA
League of the Physically Handicapped (U.S. National Park Service)
Judy Heumann (U.S. National Park Service)
When the 'Capitol Crawl' Dramatized the Need for Americans with Disabilities Act | HISTORY
 
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Ep50 Pulse 127: 50th Gala, Sunshine Act, BOSS Program, Golf Gimmes

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
50th Anniversary
PWSA Memory: Volume33-Number4.pdf
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign
2025 United in Hope International PWS Conference Recap-General
2025 United in Hope International PWS Conference Video
Fundraisers
No Gimmes for Jimmy - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Volunteer Spotlight: Pillar of Strength, Support, and Hope - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
PWSA | USA Helps Usher in New Era of Rare Disease Research with Launch of Florida’s Sunshine Genetics Act - Prader-Willi Syndrome Association | USA
Family Support
Building Our Social Skills (BOSS) Program Begins Again - Prader-Willi Syndrome Association | USA
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Ocular Issues and Eye Patching - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Study Invitation email: harri764@mailbox.sc.edu
Recognizing and Addressing Hyperphagia Early in Prader-Willi Syndrome: Strategies and Insights for Pediatric Endocrinologists and Their Care Team
Peer-to-Peer Challenge: Interactive Case Studies in Prader–Willi Syndrome
Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA
www.heroforpws.com
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
Prader-Willi Syndrome Glossary - PWSA | USA
 
Intro Music: https://www.bensound.com/; License certificate #2242442 

Ep 49: Endocrine in Teens and Adults: Conference Session

This episode is a recording from the 2025 United in Hope International PWS conference in Phoenix, AZ. "Endocrine Issues in Teens and Adults" was presented by Dr. Diane Stafford. In this session, Dr. Stafford discusses the issues of growth and pubertal development through the pre-teen and teen years in those with PWS, including the effects of growth hormone therapy and sex steroids. She also discusses the indications for the use of growth hormone therapy in those who have completed their growth, including risks and possible benefits and the indications for ongoing sex steroid therapy in adults with PWS. In this discussion you can learn more about growth hormone monitoring and deficiency, delayed or absent puberty, adrenarche vs puberty, and more. 
Visit our website at www.pwsausa.org 
 
Intro Music: https://www.bensound.com/; License certificate #2242442 
 
 

Ep48 Pulse 126: Conference Wrap Up, PWS Comic Book, Interactive Map, Law Enforcement Letter

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
United in Hope Conference
United in Hope—and Action: Reflections from the International Prader-Willi Syndrome Conference
2025 United in Hope International PWS Conference - YouTube
PWSA | USA 50th Birthday Party Drone Show
Submit conference testimonials to africke@pwsausa.org or communications@pwsausa.org
50th Anniversary
PWSA Memory: 1975-_-Vol-I-N1-July-1975.pdf
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign
Fundraisers
Hunter Lens Golf Tournament - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Share Your Story - Prader-Willi Syndrome Association | USA
Podcast
Questions for Dr. Pacha
Advocacy
advocacy@pwsausa.org
Family Support
Conference Recap from a Grateful Mom and a Happy Daughter - Prader-Willi Syndrome Association | USA
C15 Foundation – Where Unlimited Potential Can Grow and Thrive
Pacific Northwest Map: PWSA Link: Your Guide for Prader-Willi Syndrome Support
Ask Nurse Lynn: Aging in PWS and Life Spans - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today
HarmonyPWS@science37.com
Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
To-Law-Enforcement-Personnel-Regarding-Adults-with-PWS.pdf
 
Intro Music: https://www.bensound.com/; License certificate #2242442 

Ep 47: Nutrition Recommendations for PWS: Conference Session

This episode is a recording from the 2025 United in Hope International PWS conference in Phoenix, AZ. "Nutrition Recommendations for Children and Families with PWS" session was presented by Michael Tan, MS, RD, LDN, CDCES, registered dietitian at the University of Florida. This session is an overview of traditional nutrition recommendations, current recommendations and guidance, and how everyone in the family plays a role. 
Nutrition Slides from Michael Tan's session: https://www.pwsausa.org/wp-content/uploads/2025/07/PDF-Nutrition-Slides.pdf
To share your conference testimonial on the PWS United podcast, please email africke@pwsausua.org
 
Intro Music: https://www.bensound.com/; License certificate #2242442 
 

Ep46: Pioneers in PWS Series - The Parent Mentoring Program

This is the next episode in our Pioneers in PWS series, a podcast series from PWS United celebrating 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. 
In this episode, we look back at the foundation of our parent mentoring program, how it has evolved over the years, and the incredible women who have passed the torch of support. We hear a brief testimonial from two current parent mentors about some of their favorite experiences of being a mentor. This episode closes out with an interview with the current director of the parent mentoring program, Kristi Rickenbach. She shares with us how she got involved, what she loves about this work, and ultimately, what her goal is as a parent mentor. 
You can read the original Pioneers in PWS article at Pioneers in PWS - The Parent Mentoring Program - Prader-Willi Syndrome Association | USA
As a reminder, that there will be no new episode coming out next Tuesday. We will be at the International PWS Conference in Phoenix, AZ. Our next episode of PWS United will be a LIVESTREAM from a conference session on Saturday, June 28. Learn more about the session and how to join the livestream at How To Join a PWS United Livestream on Podbean - Prader-Willi Syndrome Association | USA
 
Intro Music: https://www.bensound.com/; License certificate #2242442 

Ep45 Pulse 124: Scoliosis Awareness, Conference App, Medicaid Expansion Call to Action, Livestream

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
Scoliosis Awareness - Prader-Willi Syndrome Association | USA
United in Hope Conference
Home - 2025 United in Hope PWS Conference
How-to-Download-the-2025-United-in-Hope-PWS-Conference-Mobile-App.pdf
2025 United in Hope Welcome Packet
2025Family-Agenda-2.pdf
2025ClinicalScientific-Agenda.pdf
2025ProfessionalProviders-Agenda.pdf
2025Adults-with-PWS-Agenda.pdf
50th Anniversary
PWSA Memory: 1990_Vol-XVI-N1-Jan-Feb-1990.pdf
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
Prader Silly: A Night of Rare Laughs - Campaign
Fundraisers
Hunter Lens Golf Tournament - Campaign
Hummus, Tahini, and PWS Awareness - Prader-Willi Syndrome Association | USA
United We Brunch - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Spotlight on Hope: Ada Thrives and Shines - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA
Family Support
Adults with PWS Advisory Board Spotlight: Abbott Philson - Prader-Willi Syndrome Association | USA
Family Resource Program - Parents/Caregiver Focus Groups
Family Resource Program - Sibling Focus Groups
Recruitment – SibTime II -English - Influents Innovations
Ask Nurse Lynn: Osteoporosis, Calcium, Vitamin D - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Get to Know Aardvark Therapeutics Phase 3 HERO PWS Study
Home | Hero Trial
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
Voice of the Patient Report: VOP-Report-4.30_.pdf
PWS Externally-Led Patient-Focused Drug Development Meeting
 
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Ep 44: PWSA, IPWSO, FPWR: United in Hope

On June 24-28 families and providers in the PWS community from around the world will be gathering in Phoenix, AZ for the 2025 United in Hope International PWS Conference. This is the first ever joint conference between PWSA | USA, FPWR and IPWSO, which symbolizes a historic milestone in the PWS community This groundbreaking event will shape the future of PWS research and care.In this episode, we have a conversation between the three organization heads, Susan Hedstrom, Marguerite Hughes, and of course, our own Stacy Ward. They spoke about what this conference collaboration means for the PWS community and the families we support, and how conference is a place to find community, explore the experience of rarity, and share commonality amongst people with who you may have thought were worlds apart. With a combined 100 years of dedication and work in the PWS community, this conference collaboration is a momentous event for the PWS community. Susan Hedstrom has been the Executive Director of the Foundation for Prader-Willi Research (FPWR) since 2013. Her commitment to this role was deeply rooted in a personal journey that began when her eldest son was diagnosed with Prader-Willi syndrome. Faced with the challenges posed by this rare condition, Susan made a conscious decision not to accept Prader-Willi syndrome as it had been traditionally defined. Instead, she chose to collaborate with a remarkable team of proactive and tireless individuals within FPWR to find treatments and ultimately a cure for Prader-Willi syndrome. Marguerite Hughes was IPWSO’s CEO between 2019 and 2025, prior to which she served as Vice President (2016 to 2019) and Secretary (2013-2016). She has recently stepped aside however; she has kindly agreed to continue as a volunteer in an advisory capacity. Marguerite is the parent of a 20-year-old son who has PWS. She is based in Ireland.Stacy Ward, CEO of PWSA | USA, is a longtime leader in the PWS community with a background rich in non-profit, behavioral health, education advocacy and has held multiple successful leadership roles. With 30 years of experience working with individuals with ID/DD and 20 years working with individuals diagnosed with PWS, Stacy brings a variety of skills to the role of CEO of PWSA | USA. Prior to her appointment as CEO with PWSA | USA, Stacy was the Director of Family Support.Thank you to the three of them for briefly stepping aside from a busy conference planning schedule to talk about this incredible upcoming event.
Learn more about this upcoming conference at Home - 2025 United in Hope PWS Conference
 
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Ep43: All Things Conference

PWS United hosts Carrie Ilijevich and Anne Fricke sat down with Kristi Rickenbach, PWSA | USA Parent Support Coordinator and frequent guest on the podcast, and the woman behind so much of the intricate and incredible planning, PWSA | USA’s Events Coordinator, Angela Frazier, for a conversation about all things conference. They covered many topics including the mobile app for conference, getting around the grounds and the venue, food availability and meal planning, staying cool in the Arizona heat, PWSA | USA's 50th birthday celebration, and more. 
Home - 2025 United in Hope PWS Conference
2025 Pre-Conference Feedback Survey
 
Intro Music: https://www.bensound.com/; License certificate #2242442 

Ep42 Pulse 123: Awareness Ideas, Prader Silly, Adults with PWS Spotlights, In Memory of Jim Gardner

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
PWS Awareness Month - Prader-Willi Syndrome Association | USA
United in Hope Conference
Home - 2025 United in Hope PWS Conference
High-Level 2025 Conference Schedule Family Conference
Clinical and Scientific Program
High-Level 2025 Conference Schedule Professional Providers
50th Anniversary
PWSA Memory: 1995_Vol-XX-N1-Feb-1995.pdf
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
The Zuzu Secret Novel for Elementary and Middle Grade - Beardies, Prader-Willis Syndrome, Baseball — Miriam Chernick - Author & Educator
Prader Silly: A Night of Rare Laughs - Campaign
bipocpws@gmail.com
Fundraisers
Lyra Mills's fundraising page for Prader-Willi Syndrome Association
Filling Cups with PWS Awareness - Prader-Willi Syndrome Association | USA
United We Brunch - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Spotlight on Hope: Lydia and Dalyas Dreamers - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
PWSA Advocates Represent Disability Needs and Rights in DC - Prader-Willi Syndrome Association | USA
PWS Awareness Month Proclamation Toolkit
advocacy@pwsausa.org
etowle@pwsausa.org
Family Support
Adults with PWS Advisory Board Spotlight: Conor Heybach - Prader-Willi Syndrome Association | USA
PWSA | USA Family Support Webinar: Creating Financial Security for a Loved One with PWS
Family Resource Program - Parents/Caregiver Focus Groups
Family Resource Program - Sibling Focus Groups
Ask Nurse Lynn: Genetics and Weight Gain - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Aardvark’s HERO Clinical Trial Webinar: Webinar Registration - Zoom
Home | Hero Trial
Dr. Pacha’s Educational Trends Survey: Caregiver Screener | QuestionPro Survey
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA
Announcements/Resource Spotlight
GI-Algorithm-Chart-2022.pdf
 
Intro Music: https://www.bensound.com/; License certificate #2242442