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 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.
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.
Intro Music: https://www.bensound.com/ License certificate #2242442
14 Oct 2026
Physical Therapy Fundamentals for PWS
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.
29 Sept 2026
Ep108: Newborn Screening and Florida's Sunshine Genetics Act
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.
Intro Music: https://www.bensound.com/ License certificate #2242442
Who has been a guest on PWS United
Names identified in recent episode analyses. Showing up to five guests.
Michael Tan
Kristi Rickenbach
Susan Hedstrom
Marguerite Hughes
Stacy Ward
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
YouTube views
326
Score snapshot 15 Sept 2025
Apple Podcasts (US)
5.0 / 5
20 ratings
Spotify
5.0 / 5
8 ratings
Podcast Authority Score: 65 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
83
Social presence
0
YouTube
66
Engagement
51
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