PWS United

Successful and effective conversations on sexual health include discussions on intimacy, belonging, safety, friendships, consent, and so much more. These conversations may feel intimidating for parents and caregivers. We may not know how to begin, but evidence shows that these conversations are critical to helping keep our loved ones safe from sexual exploitation (especially our loved ones with Prader-Willi syndrome), while also helping them develop a framework for understanding and participating in healthy relationships with the level of intimacy they may desire. So how do we begin?
PWSA | USA CEO, Stacy Ward, sat down with Patrice Carroll, LICSW, Director of PWS Services at Latham Centers, and Lynn Garrick, Medical and Research Coordinator at PWSA | USA to offer guidance on navigating the topic of sexual health, the importance of consent, not just as a receiver but as a listener, experiencing rejection and disappointment, the use of social media, how belonging is a part of overall health, and ultimately, how does this affect quality of life.
Read Stacy's recent article on this subject at "Every Body": Sexual Health Belongs to Everyone - Prader-Willi Syndrome Association | USA
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PWS United is celebrating 2 years of podcasting! With over 100 episodes, there's a lot to celebrate! This week's episode is a look back at the previous year of episodes (check out EP56: Celebrating One Year of Podcasting | PWS United for a look at the first year of episodes). From sibling advocacy, a personal look at single caregiving, and advice from PWS dads, to behavior and cognitive functioning, PWS research, rare pharmacies, and the inspiring world of PWS advocacy, this episode highlights the incredible work of families, caregivers, professionals, volunteers, and staff in seeking to improve the lives of and empower those living with Prader-Willi syndrome. 
Links to episodes highlighted:
Ep60: Rockie Penta: Caregiver, Roommate, Best Friend | PWS United
Ep62: Teaching Emotional Regulation in Individuals with PWS: ABA Strategies for Lasting Success | PWS United
Ep67: Broken Systems, Enduring Love, Single Caregivers Series | PWS United
Ep75: Global PWS Registry 2.0 | PWS United
Ep84: Welcoming PWSA | USA's Equity Committee | PWS United
Ep88: What is a Rare Pharmacy? How PWS Families Receive Care Through PANTHERx | PWS United
Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues | PWS United
Ep94 Advocacy is Everything: 2026 DC Fly-In Recap | PWS United
Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission | PWS United
Ep101: Transitioning PWS to Adulthood | PWS United

PWSA | USA's Director of Community Development, Melanie Zalman, sat down with caregiver Shelley Smith to shine a light on the lasting impact of thoughtful planning, enduring love, and the legacy that one family can leave behind. We came to know Shelley through her role as caregiver to her cousin Karen (with PWS) who passed away in December of last year at the age of 68.  We have begun to learn a story that spans decades of devotion, caregiving, advocacy, and planning by Karen's mom and dad, her extended family, and those who loved her the most. In this conversation, Shelley reflects on Karen's life, the commitment family made to ensuring she was cared for throughout her lifetime, and the legacy gift that will help support future generations of individuals with PWS and the people who love and care for them. 
Resource Links:
Planned Giving | PWSA USA
Support the PWS Community for Generations: Tips for Leaving a Legacy - Prader-Willi Syndrome Association | USA

This episode is a re-air from August of 2025 on the topic of planned giving and leaving a lasting legacy with PWSA. August is Make-a-Will Month, and we have some new resources, like our legacy tips, on the how and why of supporting the work of PWSA | USA through the avenue of planned giving. Thank you again to Tim Hearn, father to David (living with PWS) for an insightful and inspiring conversation on leaving a lasting legacy.
Planned Giving | PWSA USA
Support the PWS Community for Generations: Tips for Leaving a Legacy - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/  License certificate #2242442 

The PWS Roadshow is a series of events throughout the Pacific Northwest, put on by the Washington/Oregon chapter of PWSA and sponsored by Soleno Therapeutics, the makers of VYKAT XR, the only FDA-approved treatment for hyperphagia.  It is an opportunity to meet local PWS families, ask experts and connect with PWS professionals in the area, learn about new and potential treatments for hyperphagia, and connect with Soleno PACE for product support and resources.
As Vonnie Sheadel, chapter president, host of the PWS roadshow, and mom to Bill (46, living with PWS) wrote:
“Because PWS is rare, families frequently face isolation, often traveling vast distances just to find specialized support. The PWS Roadshow is actively changing that narrative by establishing immediate, tight-knit local circles of permanent support right in these families’ backyards—including connecting with individuals and families who may have been missed by traditional outreach in the past.”
In this episode you’ll hear from Vonnie herself, Cainan (adult living with PWS), and his mom Heather, PWS parents Joseph and Erin, and PWS United's co-host Anne and her daughter Freya (living with PWS), all talking about the Medford PWS Roadshow, along with the value and importance of creating and attending events like these.
PWS Link Map | Mysite
Events | PWSA-OR-WA.ORG
 
Intro Music: https://www.bensound.com/  License certificate #2242442 
Music: www.purple-planet.com

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
Join our Newsletter - Prader-Willi Syndrome Association | USA
Pulse Header
The Road to the Americans with Disabilities Act (ADA) - Prader-Willi Syndrome Association | USA
What Does Disability Pride Month Mean to Me? - Prader-Willi Syndrome Association | USA
Spotlight on PWS
Share Your Story - Prader-Willi Syndrome Association | USA
Resource Spotlight
Medical-Reference-Guide-for-Parents-Rebranded-2022.pdf
Events | Fundraisers
Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign
Residential Providers Conference - Prader-Willi Syndrome Association | USA
PWS Community Day Registration (Los Angeles) Survey
PWS Community Day Registration (San Franscisco Bay Area) Survey
PWSA Events
Podcast
Ep101: Transitioning PWS to Adulthood | PWS United
Advocacy
Meet Our Equity Committee: Ashish Rishi - Prader-Willi Syndrome Association | USA
Calling Nevada PWS Families - Prader-Willi Syndrome Association | USA
Family Support
Why We Gather - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Deconditioning After Hospital Stay - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
MedPanel Research: survey.alphadetail.com/wix/8/p451407915088.aspx
PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA
 
Intro Music: https://www.bensound.com/  License certificate #2242442 
Music: www.purple-planet.com
Disclaimer for show notes: 
This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.

PWS Moms, Jen Garzia (mom to Rocco, 22), Denise Servais (mom to Maya, 22), and Elaine Towle (mom to James, 40) share the challenges, successes, and timelines of helping their loved one transition into adulthood. Guardianship, social security benefits, day programs, and medical care are the focus of this conversation. But the thread through it all is the call for adaptability. How to shift gears, perspectives, and expectations when one solution isn’t a good fit. What it looks like when, after twenty years of following the plot line, you realize the systems in place do not comply.
As PWS mom Jen Garzia says in this episode, “the systems aren’t as advanced as our kids have become.” This is not an episode on the frustrations and grief of broken and archaic systems, of a society still learning how to care for its more vulnerable members, but one of versatility, steadfastness, and the wisdom, creativity, and effectiveness of adapting.
Intro Music: https://www.bensound.com/  License certificate #2242442 
Music: www.purple-planet.com

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
Pulse Header
2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA
Caribe Royale Resort | Resort in Orlando Florida | Official Site
(7) Facebook Live | Facebook
Spotlight on PWS
Share Your Story - Prader-Willi Syndrome Association | USA
Resource Spotlight
Understanding Constipation in Prader-Willi Syndrome
Events | Fundraisers
PWS Community Day Registration (Los Angeles) Survey
PWS Community Day Registration (San Franscisco Bay Area) Survey
PWS Roadshow Heading to Spokane, Washington, July 11: Summer Tour Breaks Isolation and Builds 'Instant Villages' Across the Northwest - Prader-Willi Syndrome Association | USA
PWSA Events
Podcast
Ep99: Navigating School Transitions, Trainings, Non-Negotiables, and More with Destiny Pacha | PWS United
Advocacy
Calling Nevada PWS Families - Prader-Willi Syndrome Association | USA
Access to Services for Individuals with PWS in Georgia Survey
Family Support
Conference Recap from a Grateful Mom and a Happy Daughter - Prader-Willi Syndrome Association | USA
Prader-Willi Syndrome Association of Minnesota | PWSA-MN
Ask Nurse Lynn: Supporting a Long Life with PWS - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
MedPanel Research: survey.alphadetail.com/wix/8/p451407915088.aspx
TREND Community: Shedding Light on PWS and Sleep - Understanding Cataplexy
PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA
Announcements
PWSA | USA Board of Directors Member Spotlight: John Lens - Prader-Willi Syndrome Association | USA
 
Intro Music: https://www.bensound.com/  License certificate #2242442 
Music: www.purple-planet.com
Disclaimer for show notes: 
This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.
 

This episode is loaded with important information for your school-aged loved one with PWS. Destiny Pacha, PWS education specialist and IEP consultant, gathered questions from parents and caregivers in the community about many aspects of the school experience. Topics covered include progress reports, how to re-evaluate and advocate for necessary supports, what are the non-negotiables, when to discuss extended school year (ESY) options, staff trainings, transitioning to a new classroom, school, or from summer break, addressing food security in the classroom, and more. Be sure to keep this podcast in your library as you will likely want to refer back to it again and again! 
Be sure to check out the many valuable resource links below. 
Questions for Dr. Pacha
Empowered Solutions
EmpowerED Solutions (@empowered_solutions_) • Instagram photos and videos
Family Support Webinar: Everything You Need to Know About Extended School Year
It Starts With Hello: Katie's Story About Prader-Willi Syndrome | Book Reading with Author Dr. Pacha
Family Support Webinar: Creating an Individualized Health Plan
Family Support: Social Stories - Prader-Willi Syndrome Association | USA
Resources A-Z: Cards - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/  License certificate #2242442 

The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 
24 Hour Crisis Line: 941-312-0400
Pulse Header
2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA
Caribe Royale Resort | Resort in Orlando Florida | Official Site
Spotlight on PWS
Share Your Story - Prader-Willi Syndrome Association | USA
Resource Spotlight
How To Travel with Refrigerated Medication - PWSA USA
Events | Fundraisers
Mom’s Hike: 2026 Event Series
pwshikingmom@gmail.com
Home - DADventure Retreat
PWSA Events
Podcast
Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission | PWS United
Advocacy
Advocacy & Awareness - Prader-Willi Syndrome Association | USA
Family Support
Appreciation for Fathers and How They Show Up for PWS - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Anesthesia and Steroids - 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
PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA
Announcements
PWSA | USA Board of Directors Member Spotlight: John Lens - Prader-Willi Syndrome Association | USA
 
Intro Music: https://www.bensound.com/  License certificate #2242442 
Music: www.purple-planet.com
Disclaimer for show notes: 
This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.