PWS United

By PWSA | USA

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 togeth... more

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FAQs about PWS United:

How many episodes does PWS United have?

The podcast currently has 56 episodes available.

PWS United episodes:

August 26, 2025 EP55: Hope, Perseverance, and Soleno's Path to an FDA-Approval for Prader-Willi Syndrome
How does the perseverance of a community and the dedication of a pharmaceutical company lead to an FDA-approved treatment?

On this episode of PWS United, Anish Bhatnagar, CEO of Soleno Therapeutics, and Kristen Yen, Senior Vice President of Global Clinical Operations, met with Dorothea Lantz, PWSA | USA’s Director of Community Engagement, to look back on their path to FDA approval for VYKAT XR. VYKAT XR is the first-ever FDA-approved treatment for hyperphagia in individuals with Prader-Willi syndrome 4 years of age and older. Anish, Kristen, and Dorothea discuss the unique obstacles they faced along the way to FDA approval and how the company and our PWS community overcame those hurdles. They also discuss the importance of advocacy in obtaining FDA-approved treatments, the experience of finally receiving approval after a long journey, and how Soleno is ensuring access and affordability to VYKAT XR, while also helping families educate and engage with their medical professionals.

What are Anish and Kristen’s messages of hope for the PWS community? Listen to this episode of PWS United to find out.

Links:

https://www.vykatxr.com/
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24min
August 21, 2025 Ep55 (Bonus Episode!): Leave a Lasting Legacy with PWSA | USA
August is National Make-A-Will Month, and in this special bonus episode of PWS United, we’re shining a light on the importance of planning ahead - both for our families and for the future of PWSA | USA. This milestone year marks PWSA’s 50th anniversary, offering a meaningful opportunity to reflect on the legacy we want to leave for the Prader-Willi syndrome community.
Host Carrie Ilijevich is joined by Melanie Zalman, PWSA’s Director of Development and mom to Josie, and Tim Hearn, a member of PWSA’s Board of Directors and dad to David. Together, they talk about the power of planned giving and why sustainability matters for an organization that families rely on for support, guidance, and advocacy.
For caregivers, planning ahead brings peace of mind, knowing that loved ones will have the support and security they need throughout their lives. A bequest through your will or trust is a deeply meaningful way to make a lasting impact, ensuring that PWSA can continue its vital programs and services today, tomorrow, and for generations to come.
As we look back on five decades of progress and ahead to a hopeful future, we invite you to learn more about legacy giving and consider joining the families who’ve already made this commitment to sustaining PWSA’s mission.
Important links:
PWSA | USA 50th Journey of Hope Gala
PWSA | USA's Make and Impact Website
PWSA | USA's Planned Giving Webpage
For questions, email [email protected].

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

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29min
August 19, 2025 EP54: Pulse 129: Nonprofit Day, Gala Emcee, Rare Across America, Parent Training for IEPs
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
Planned Giving
Your PWS Story Matters—And the Legacy You Leave Can Echo Far into the Future - Prader-Willi Syndrome Association | USA
Planned Giving | PWSA USA
PWSA Memory
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign
Journey of Hope Gala Honoree Spotlight: Dr. Dan Driscoll, MD, PhD - Prader-Willi Syndrome Association | USA
Journey of Hope Gala Honoree Spotlight: Dr. Suzanne Cassidy, MD - Prader-Willi Syndrome Association | USA
Aaron Weber Stand-Up: Having a Newborn, Urgent Care | The Tonight Show Starring Jimmy Fallon
Fundraisers
Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
Michigan PWS Families - Your Voices are Needed! - Prader-Willi Syndrome Association | USA
Federal Budget Proposals Could Undermine Critical Supports for Students with Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA
PWS Advocates Participate in Rare Across America Congressional Meetings - Prader-Willi Syndrome Association | USA
Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA
Family Support
The Importance of Caring for your Relationship - Prader-Willi Syndrome Association | USA
Empowering PWS Families in IEP Meetings – Registration for Parent Training
Ask Nurse Lynn: Bowel Blockage, Edema, and Hospital Stay - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Harmony Biosciences TEMPO Trial Webinar: Webinar Registration - Zoom
Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA
Minneapolis, Minnesota
University of Minnesota Masonic Childrens Hospital
Contact: Bradley Miller, MD
Phone: (612) 624-5409
Email: [email protected]
www.heroforpws.com
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Request for Prader-Willi Syndrome Research Grant Applications
Announcements/Resource Spotlight
School Success Summit - Prader-Willi Syndrome Association | USA

Intro Music: https://www.bensound.com/ License certificate #2242442
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30min
August 12, 2025 Ep53: Empowering Families with Dr. Destiny Pacha, Parent Submissions
On today’s episode, we welcome Destiny Pacha, Ed.D., the president of EmpowerED Solutions, an organization dedicated to providing educational consulting, IEP advocacy, and support for families and professionals navigating the complex needs of children with Prader-Willi syndrome (PWS) and other genetic disorders in school settings.

Dr. Pacha was a recent speaker at our United in Hope Conference and graciously offered to extend her discussion time with caregivers. She created a form for people to submit questions and then came onto the podcast to share those responses with our community. Topics included why or why not to disclose a PWS diagnosis, service requirements in relation to public vs private schools, the differences between modifications and accommodations in an IEP, special diplomas, how to know if an IEP is being implemented, the differences between language therapy and speech therapy, and more. This discussion is a wealth of information for anyone with a child with PWS in school. Listen to this episode to learn more about IEP and school support, along with an upcoming training for parents from Dr. Pacha, “Empowering PWS Families in IEP Meetings.”

LINKS
Empowering PWS Families in IEP Meetings training registration: https://docs.google.com/forms/d/e/1FAIpQLSdv4Y73t_n-xjOr2QHH5J4pcvyaqGqaKB2dTqORemXzPnHZCA/viewform

Dr. Pacha’s website: https://www.empoweredsolutions.org/
Instagram: https://www.instagram.com/_empowered_solutions/
Facebook: https://www.facebook.com/empowerededucationsolutions

Sign up for our Pulse Newsletter and stay informed at: https://www.pwsausa.org/join-newsletter/
PWSA | USA Instagram: https://www.instagram.com/pwsausa/
PWSA | USA Facebook: https://www.facebook.com/PWSAUSA

Intro Music: https://www.bensound.com/; License certificate #2242442
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58min
August 05, 2025 Ep52 Pulse 128: Make-A-Will Month, Big Advocacy Win, Dance Silly for Prader-Willi, BOSS Program Update, Harmony Biosciences Webinar
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
Make-A-Will Month
Your PWS Story Matters—And the Legacy You Leave Can Echo Far into the Future - Prader-Willi Syndrome Association | USA
Planned Giving | PWSA USA
PWSA Memory
PWSA Memory: PWSA Conference Held with Prader-Willi California Foundation in 1999 - Prader-Willi Syndrome Association | USA
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign
Fundraisers
2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | USA
Contact email: [email protected]
16th Annual Hunter Lens Golf Tournament - Prader-Willi Syndrome Association | USA
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Volunteer Spotlight: Melissa Rivas - Spreading Joy, Creativity, and Hope - Prader-Willi Syndrome Association | USA
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
Exciting News! PWS Included in FY26 Department of Defense Appropriations Bill for Medical Research
Medicaid-Fact-Sheet-1.pdf
Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA
Family Support
Understanding Gastric Motility and Gastroparesis in PWS - Prader-Willi Syndrome Association | USA
Building Our Social Skills (BOSS) Program Begins Again - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Leptin and Hyperphagia
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Harmony Biosciences TEMPO Trial Webinar: Webinar Registration - Zoom
Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA
www.heroforpws.com
Announcements/Resource Spotlight
Qualifying for Social Security Disability with PWS

Intro Music: https://www.bensound.com/; License certificate #2242442
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37min
July 29, 2025 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: [email protected]
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

Intro Music: https://www.bensound.com/; License certificate #2242442
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56min
July 22, 2025 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: [email protected]
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
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28min
July 15, 2025 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

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57min
July 08, 2025 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 [email protected] or [email protected]
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
[email protected]
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
[email protected]
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
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49min
July 01, 2025 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 [email protected]

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

...more
57min

FAQs about PWS United:

How many episodes does PWS United have?

The podcast currently has 56 episodes available.