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

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

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 [email protected] 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.

Father's Day is almost here (June 21), and we're celebrating with two incredible dads from the PWS community. PWSA | USA's Director of Development Melanie Zalman and Fundraising Coach Katie Martinez sat down with John Lens, dad to Hunter, and Clint Hurdle, dad to Maddie. Both are proud fathers, PWSA | USA Board of Directors members, and longtime champions of the PWS community. For over a decade, John and Clint have each hosted annual fundraising events to benefit PWSA | USA: The Hunter Lens Golf Tournament and the Clint Hurdle Hot Stove Dinner. In this heartfelt conversation, they open up about their families, their loved ones' journeys with PWS, and what keeps them coming back year after year to give back to the broader PWS community. They also share personal reflections on fatherhood and offer advice for others walking a similar path. To all the dads in our PWS community, Happy Father's Day! Hunter Lens Golf Tournament Saturday, September 19, 2026 | Heritage Hills Golf Course, Lakeville, MA Learn more and register at: https://give.pwsausa.org/event/hunter-lens-golf-tournament/e791873 Clint Hurdle Hot Stove Dinner Save the Date! Saturday, March 20, 2027 | Bradenton, FL Registration details coming soon at pwsausa.org.

The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Pulse Header Enjoy Summer with this List of Fun Activities! - Prader-Willi Syndrome Association | USA Navigating Summer Celebrations - Prader-Willi Syndrome Association | USA Staying Safe in the Heat - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight TREND Connect Events | Fundraisers Dancing Through the Decades - Campaign Donate to Hummus & Watermelon: United We Brunch for PWS PWSA Events Podcast Ep95 Garrick Siblings: Importance of Community and Listening | PWS United Advocacy Local Moms Show Support for Prader-Willi Syndrome Awareness Day Finding the Funny Prader Silly: A Night of Rare Laughs - Campaign D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA Family Support Awareness Month Success: Thank you, PWS Community! - Prader-Willi Syndrome Association | USA Medical Stories - Prader-Willi Syndrome (PWS): Ayoni's Story Ask Nurse Lynn: NG Tube or G Tube - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Home - Global Prader-Willi Syndrome Registry The Missing Piece in the Prader-Willi Puzzle: Optimizing Transitions of Care and Patient Quality of Life PRETEND Program for Preschoolers Eligibility Form PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA Announcements 2027 PWSA | USA United in Hope National Convention - 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.

We’re excited to share our latest Sibling Advocacy episode on PWS United. In this ongoing series, we talk with siblings about how they show up for their loved ones with PWS, whether at the kitchen table, at school, among friends, in government spaces, or anywhere their sibling may need support.  This episode is hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS. She spoke with Hannah and Alex Garrick, siblings to John (20, living with PWS). They share a bit about their lives growing up with a sibling with PWS; the neighborhood watch, food security, and how it led them into the careers they have now.  Hannah and Alex are open about the aggression they experienced from their brother and how food security was difficult, but also share the love they feel for John, the lessons they have gained from their experiences with him, and the relief and happiness that he is doing so well in his current situation. They talk about the importance of listening, both siblings to their loved one with PWS and parents to the sibling, community involvement for the individual with PWS, and how their family has approached the conversation of guardianship. Learn more about Prader-Willi syndrome and PWSA | USA at www.pwsausa.org   Intro Music: https://www.bensound.com/  License certificate #2242442