PWS United

October 16 and 17, 100 moms from the PWS community gathered in Park City, UT for our PWSA | USA Moms Retreat. It was a chance to step away, take a breath, and spend time with other moms who understand life with Prader-Willi Syndrome. Some moms got to hug old friends, and many made new ones. There was mindfulness, connection, journaling and art activities, delicious food, wine tasting, and time well spent around the fire, all with the beautiful back drop of the stunning Wasatch Mountains. This episode shares the voices of some of the moms who attended the retreat, what they enjoyed about it, and the supports they had in place to be there. We know that not everyone mom can step away for a few days at a time, but we hope this episode is a reminder on the importance of community and finding people who understand. Whether or not you attended retreat, you belong here. 
 
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We spoke with two incredible physical therapists and PWS moms for this week's episode. Janice Agarwal and Abigail Ogilbee spoke in depth about the early years of Prader-Willi syndrome, hypotonia, and how physical therapy is a critical treatment. With over 30 years of experience, Janice was able to talk about physical therapy with PWS then and now, along with the truly beneficial addition of growth hormone. Abigail shares some of the newer strategies like dynamic movement intervention and Theratog suits. Both ladies offer an array of exercises and activities, along with stressing the importance of trunk support and physical therapy involving daily interactions and activities. This episode is an informative look at physical therapy throughout the PWS journey and full of practical activities families can, and should, do at home. 
Learn more about PWS and physical therapy: 
Therapeutic-interventions-1-1.pdf - Booklet by Janice Agarwal
Physical Therapy: The Basics - Prader-Willi Syndrome Association | USA
BIOS
Janice Agarwal, PT, cNDT, is the Co-Founder & Executive Director of Watch Us Farm. She is also a pediatric physical therapist with 40 years of experience. Janice led the Neurodevelopment Evaluation Team at Boston City Hospital and the Early Intervention Team at St. Mary’s Hospital for Children in New York and earned her Pediatric NeuroDevelopmental Training certification at the Bobath Center in London, England.  Janice creates Behavioral and Sensory Integration plans for individuals and families nationally and internationally. She also has an adult son, Alex, with PWS.
Abigail Ogilbee holds a Doctorate of Physical Therapy degree with over 13 years of experience in pediatric physical therapy, focusing on children 0-5 years. She is certified in intermediate level DMI (Dynamic Movement Intervention), Theratog fittings, and electrical stimulation for infants and toddlers. Abigail now owns and operates Mat-Su Pediatric Physical Therapy in Wasilla Alaska.

Representative Adam Anderson joined the podcast to discuss newborn screening and the Florida Sunshine Genetics Act, Florida’s innovative voluntary research program using whole-genome sequencing as an additional newborn screening tool. The program, developed in collaboration with the Florida Institute for Pediatric Rare Diseases at Florida State University and other leading research and medical institutions, offers eligible Florida families the opportunity to screen their newborns for approximately 900 childhood-onset genetic conditions—many of which may benefit from earlier identification, intervention, monitoring, or treatment.
 
Our Director of Community Engagement, Dorothea Lantz, who serves as Chair of the Sunshine Genetics Community Advisory Board and was involved as a rare disease advocate during the development of the Sunshine Genetics Act, spoke with Rep. Anderson about the personal story that led him into rare disease advocacy, the path from legislation to the creation of Sunshine Genetics and the Florida Institute for Pediatric Rare Diseases, and Florida’s growing investment in pediatric precision medicine. Their conversation explored the potential of genomic newborn screening to shorten the diagnostic journey for families, the importance of connecting families and pediatricians with genetic counselors and rare disease expertise, and how earlier identification of genetic conditions can help families access appropriate care and make more informed decisions about their child’s health.
 
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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
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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
 
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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
 
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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.
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