Explore every episode of the podcast PWS United
| Title | Pub. Date | Duration | |
|---|---|---|---|
| Ep110: PWS Moms Retreat, We Belong Here | 27 Oct 2026 | 00:23:01 | |
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 | |||
| Physical Therapy Fundamentals for PWS | 14 Oct 2026 | 00:52:41 | |
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. | |||
| Ep108: Newborn Screening and Florida's Sunshine Genetics Act | 29 Sep 2026 | 00:35:50 | |
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 | |||
| Ep107: Belonging, Intimacy, and Sexual Health with PWS | 15 Sep 2026 | 00:29:48 | |
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 | |||
| Ep106: Behavior, Advocacy, Siblings: Celebrating 2 Years of Podcasting | 01 Sep 2026 | 00:50:19 | |
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 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 | |||
| Ep105: Spreading Love: The Life and Legacy of Karen and Her Family | 26 Aug 2026 | 00:37:41 | |
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: | |||
| Ep104: Leave a Lasting Legacy with PWSA | USA (Episode Re-Air) | 18 Aug 2026 | 00:28:40 | |
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. Intro Music: https://www.bensound.com/ License certificate #2242442 | |||
| Ep103: PWS Roadshow: Building Community, One Stop at a Time | 04 Aug 2026 | 00:22:15 | |
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.
Intro Music: https://www.bensound.com/ License certificate #2242442 Music: www.purple-planet.com | |||
| Ep102 Pulse 151: Disability Pride, Podcast Changes, Voices on VYKAT 6 | 21 Jul 2026 | 00:53:30 | |
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 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. | |||
| Ep101: Transitioning PWS to Adulthood | 14 Jul 2026 | 00:53:53 | |
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 | |||
| Ep100 Pulse150: 100 Episodes, Convention, State Specific Events | 07 Jul 2026 | 00:29:41 | |
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 Understanding Constipation in Prader-Willi Syndrome Events | Fundraisers PWS Community Day Registration (Los Angeles) Survey PWS Community Day Registration (San Franscisco Bay Area) Survey Podcast 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.
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| Ep99: Navigating School Transitions, Trainings, Non-Negotiables, and More with Destiny Pacha | 30 Jun 2026 | 01:08:05 | |
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. 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 | |||
| Ep98 Pulse 149: Events for Moms and Dads, Convention Registration, VYKAT Testimonial | 23 Jun 2026 | 00:41:30 | |
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 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. | |||
| Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission | 16 Jun 2026 | 00:40:56 | |
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. | |||
| Ep96 Pulse 148: Preparing for Summer, Awareness Month Gratitude, Getting Involved in Research | 09 Jun 2026 | 00:29:02 | |
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 Events | Fundraisers Dancing Through the Decades - Campaign Donate to Hummus & Watermelon: United We Brunch for PWS Podcast Ep95 Garrick Siblings: Importance of Community and Listening | PWS United Advocacy Local Moms Show Support for Prader-Willi Syndrome Awareness Day 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 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. | |||
| Ep95 Garrick Siblings: Importance of Community and Listening | 02 Jun 2026 | 00:35:37 | |
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
Intro Music: https://www.bensound.com/ License certificate #2242442 | |||
| Ep94 Advocacy is Everything: 2026 DC Fly-In Recap | 26 May 2026 | 00:43:02 | |
PWS advocates had an incredible experience in Washington, D.C., this past May 4-6. From policy deep dives and meetings with congressional representatives, to cocktail meetups and seeing old friends, it was a busy, but nourishing, few days. The communications team at PWSA | USA spoke with several attendees at the fly-in to hear their thoughts on what they want their representatives to take home from these meetings, moments that stood out to them, and how to describe PWS advocacy with one word. Resources: 2026-Hill-Day-Ask-Document-RDIH.pdf FDA Rare Disease Innovation Hub | FDA 2026-Hill-Day-Ask-Document-Genomic-Answers-for-CHA.pdf | |||
| Ep93 Pulse 147: PWS Awareness Day, D.C. Fly-In Recap, Voices on VYKAT 5 | 19 May 2026 | 00:48:29 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400
Pulse Header The Importance of PWS Awareness Day - PWSA | USA Blog Resource Spotlight PWS Awareness Month Hummus & Watermelon United We Brunch Event - May 31, 2026 | Omaha, NE Events | Fundraisers View All Upcoming PWS Community Events Soleno Therapeutics PWS Community Day in New Jersey United in Action - PWS Awareness Month Campaign Podcast Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues Advocacy A full recap of PWSA | USA's 2026 D.C. Fly-In is coming soon! RSVP to: bipocpws@gmail.com Calling Kansas PWS Families - PWSA | USA Blog Family Support PWS Roadshow Connects Families in Bellingham for Life-Changing Outreach Event - PWSA | USA Blog Ask Nurse Lynn: Recurring Urinary Tract Infections (UTI) - PWSA | USA Blog Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research PRETEND Play Intervention Study for Ages 3-7: Eligibility Form For questions, email: neurodevelopmentresearchlab@gmail.com PWS Clinician Information Collection Form PWSA | USA Announcements 2027 United in Hope National PWS Convention Scholarship Applications (Due by June 1, 2026)
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. | |||
| Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues | 12 May 2026 | 00:49:29 | |
For this episode we brought in Lynn Garrick, PWSA | USA's Medical and Research Coordinator, mom to John (living with PWS, and the woman behind Ask Nurse Lynn to talk about behavior and psychiatric issues. We learn some important behavioral tips, the importance of consistency, the signs of when it might be time to intervene with medication, how disordered sleep affects behavior, and more. Our Ask Nurse Lynn library is growing by the week! Please take a moment to look through those articles at Ask Nurse Lynn Archives - Prader-Willi Syndrome Association | USA If you have a non-emergency medical question and would like a response from Lynn, please visit Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Intro Music: https://www.bensound.com/ License certificate #2242442 Music: www.purple-planet.com | |||
| Ep91 PWS Awareness Month is Here: How to Get Involved | 05 May 2026 | 00:52:06 | |
Another PWS Awareness Month (May 1-31) has arrived and we're excited to continue spreading awareness, information, and support for our loved ones with PWS! In this episode, PWSA | USA's Communications, Advocacy, and Development teams share ways to get involved during PWS Awareness Month - from everyday awareness actions to fundraisers, advocacy efforts and the D.C. Fly-In. Throughout May, be sure to join our social media platforms on Facebook and Instagram so you can share our daily PWS facts for this month. Get your PWS gear to rep awareness, create a fundraising page or event, file a Proclamation Day request using our Proclamation Toolkit, speak at your child's school, share resources with their group home, tell a coworker about our PWS United podcast, or take a friend out for coffee to tell them about your loved one. No action is too small! Use the links below to check out all of the awareness month resources on our resource hub webpage or read our detailed blog on the many different actions you can take this month. No matter how you spread awareness, your work to share the realities of PWS are appreciated. We're here to support you and your loved one with PWS. Happy PWS Awareness Month!
Get in touch with us:
Helpful links: United in Action - Click Here to Take Action! 3rd D.C. Fly-In - Click Here to Find our Legislative Ask Documents Find Your Legislator Locator Website
PWSA | USA is available for the PWS community 24-hours a day, 365 days a year. If and when you need support, please reach out to us. You can call us at (941) 312-0400 or email info@pwsausa.org. We are here for you every step of the PWS journey.
Intro Music: https://www.bensound.com/ License certificate #2242442 Music: www.purple-planet.com | |||
| Ep90 Staying Curious: Continuing the Equity Conversation | 28 Apr 2026 | 01:00:50 | |
Today’s episode features two more members of our new equity committee, Wordna Meskheniten and Dhivya Venkataraman, along with PWSA CEO Stacy Ward, PWSA Board Member and PWS mom, Dini Rao, and Marketing and Communications Coordinator and PWS mom Anne Fricke. Wordna and Dhivya bring thoughtful insight, experience, and an impressive array of education and work experience to this conversation on how people’s identifiers, on top of a diagnosis of Prader-Willi syndrome, may affect their experiences in the school setting and beyond. This episode touches on the ideas of equity journeys, equity as an everyday practice, the dehumanization of specific identities and how privilege plays a role in that. PWS does not recognize barriers of biological sex, race, gender identity, ethnicity, sexual orientation, income level, faith, or where in the world someone is born. It is found in every community. The power we have to enact change, to advocate for better services, to demand treatment options, is in the community that we have and that we create, and that community includes everyone touched by PWS. Sometimes people may fear that they will lose something in the implementation of equity initiatives -- that somehow, by opening the circle, they will be pushed out. But circles can continue to grow. Promoting and supporting equity initiatives does not take away from people, does not exclude people, it opens up the circle and invites more people in. So we invite you into this conversation, ask you to stay curious, and join us as we explore equity and PWS. | |||
| Ep89 Pulse 145: PWS Awareness Month, DC Fly-In, Voices on VYKAT 4, Autism Blog | 21 Apr 2026 | 00:49:25 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400
Pulse Header Occupational Therapy, Parent Perspective - Prader-Willi Syndrome Association | USA Spotlight on PWS Diving in to Volunteering - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Treatment Approaches for Prader-Willi Syndrome PWS Awareness Month PWS Awareness Month - Prader-Willi Syndrome Association | USA Events | Fundraisers Magnolias & Mimosas - Campaign PWS Community Day Registration (Miami) Survey Miami_PWS_Community_Day_Digital_Invite.pdf Podcast Ep88: What is a Rare Pharmacy? How PWS Families Receive Care Through PANTHERx | PWS United Advocacy Monday Office Hours for DC Fly-In Attendees: Join from Zoom Workplace app - Zoom Friday Office Hours for DC Fly-In Attendees: Join from Zoom Workplace app - Zoom Family Support Ask Nurse Lynn: Cataplexy Evaluation - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Soleno Webinar: One Year of VYKAT XR - Celebrating milestones in treating hyperphagia in PWS TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today 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.
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| Ep88: What is a Rare Pharmacy? How PWS Families Receive Care Through PANTHERx | 14 Apr 2026 | 00:42:23 | |
One year ago, on March 26, 2025, the PWS community reached a landmark milestone with the FDA approval of VYKAT XR - the first-ever treatment for hyperphagia in PWS. But what happens after approval? How do families actually access the therapy? In this episode of PWS United, PWSA | USA CEO Stacy Ward and Director of Development Melanie Zalman sit down with members of the PANTHERx Rare Pharmacy team to answer exactly that. PANTHERx is the distributing pharmacy for VYKAT XR, and their approach goes far beyond simply filling prescriptions. The team walks us through the PANTHERx Rare Care Model, explains the difference between a rare pharmacy and a specialty pharmacy, and shares how they personally get to know each family's unique needs, including guiding them through the insurance appeal process every step of the way. PWSA | USA is grateful for the meaningful relationship we've built with the PANTHERx team and their dedication to our community. We hope this conversation serves as a helpful resource for families who may be navigating the world of rare pharmacy for the first time and leaves you feeling a little more informed and empowered along the way. Episode Resources: PANTHERx Rare Pharmacy Website VYKAT XR FAQ for Parents and Caregivers PWSA | USA Blog - Reflections from PWSA | USA's Visit to PANTHERx Rare Pharmacy
Intro Music: https://www.bensound.com/ License certificate #2242442
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| Ep87: Pulse 144: Conference Scholarships, Sibling Blog, VYKAT Approval Anniversary | 07 Apr 2026 | 00:25:44 | |
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 Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Understanding Prader Willi Syndrome & Autism Events | Fundraisers PWS Roadshow: Events | PWSA-OR-WA.ORG PWS Community Day Registration (Miami) Survey Miami_PWS_Community_Day_Digital_Invite.pdf Podcast Ep86: Homeschooling, The Ins and Outs of Educational Choice | PWS United Advocacy HUD Changes Eviction Notice Rules for HUD-Assisted Housing - Prader-Willi Syndrome Association | USA Monday Office Hours for DC Fly-In Attendees: Join from Zoom Workplace app - Zoom Friday Office Hours for DC Fly-In Attendees: Join from Zoom Workplace app - Zoom Family Support Growing up with PWS: A Sibling's Story - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Soleno Webinar: One Year of VYKAT XR - Celebrating milestones in treating hyperphagia in PWS Tirzepatide Study: Contact the Endocrine Research Team at EndocrineResearch@seattlechildrens.org or 206-987-2540, or visit Study Details | NCT06901245 | Tirzepatide in PWS, HO and GNSO | ClinicalTrials.gov PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/ License certificate #2242442
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. | |||
| Ep86: Homeschooling, The Ins and Outs of Educational Choice | 31 Mar 2026 | 00:58:05 | |
Our guest today, Julie Casey, mom to Ryan (22, living with PWS), shares her knowledge and experience from homeschooling. The intention of this episode is to shed light on the topic and personal experience of homeschooling with PWS. We offer information so that families in our community, of all configurations (and Julie gets into that), can make informed choices about how their children with PWS are educated. We discuss how to decide if homeschooling is the right decision, or something you’d like to try, the different ways to homeschool, how to find credible information, curriculum, and resources, what it looks like to receive services, and building a homeschooling community. This episode is packed full of information, anecdotes, and, perhaps, inspiration to get you started. Links: Researching curriculum: https://cathyduffyreviews.com/ Oak Meadow | K-12 Homeschool Curriculum & Distance Learning General information: https://www.homeschool.com/ Laws by state: https://www.homeschool.com/articles/state-homeschooling-laws/ Homeschool laws by state: Homeschool Laws By State The Way They Learn - Cynthia Tobias is a quick easy read that helps parents realize how their child learns. | |||
| Ep85: Pulse 143 Hot Stove, Disordered Sleep, Voices on Vykat 3 | 24 Mar 2026 | 00:39:50 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Pulse Header Spotlight on PWS PWSA | USA Rare Aware Art Share: Theme #1 Gallery PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Swallowing in Prader-Willi Syndrome Events | Fundraisers You're Invited to Solidarity & Spice: A Message from Dini Rao PWSA Fundraising Pages - Campaign Podcast Ep84: Welcoming PWSA | USA's Equity Committee | PWS United PWSA | USA Media Submissions - Prader-Willi Syndrome Association | USA Advocacy Prader-Willi Syndrome (PWS): A Rare Condition With Everyday Challenges Rare Diseases by Mediaplanet_USA - Issuu Prader-Willi Syndrome (PWS): A Rare Condition With Everyday Challenges - Future of Personal Health Family Support Ask Nurse Lynn: Dissociation and PWS Mental Health - 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 PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA Announcements
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. | |||
| Ep84: Welcoming PWSA | USA's Equity Committee | 17 Mar 2026 | 00:51:32 | |
In this episode, we introduce PWSA | USA’s newly formed Equity Committee and some of the members. We discuss the importance of an equity committee, who’s been missing from the conversations, data, research, and services, and how involving families from marginalized communities is essential to our organization and our humanity. We talk about health equity, the different dimensions of diversity, how and why to have these difficult conversations, and how families can help support equity at home. Joining Anne Fricke, PWSA | USA's communications coordinator, for this conversation are Tracy Chin, PWS parent and RN working in community-based transitional care; Ashish Rishi, founder and CEO of Unwritten Health; Dini Rao, PWS parent, community organizer and PWSA board member; and PWSA's CEO, Stacy Ward. Links: Solidarity and Spice: https://give.pwsausa.org/event/solidarity-and-spice/e758863 Donate to PWSA | USA’s Equity Committee. Follow the link to donate and clarify in your donation that you would like the money to go to the Equity Committee: Donate - Prader-Willi Syndrome Association | USA Implicit Bias Test: Take a Test So You Want to Talk About Race: So You Want to Talk About Race used book by Ijeoma Oluo: 9781580058827 Tracy: In terms of equity books, I highly recommend this one: "Being Heumann: An Unrepentant Memoir of a Disability Rights Activist": Being Heumann | Personal Story & Fighting Education | Judithheumann This isn't a book, but the documentary "Crip Camp" is really good as well!: Crip Camp | A Disability Revolution Ashish: One book I can definitely recommend is: Reigniting the Human Connection: A Pathway to Diversity, Equity, and Inclusion in Healthcare - its a really good book about how a clinic in US made themselves more inclusive.: Reigniting the Human Connection — Dr. Jennifer Mieres
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| Ep83 Pulse 142: Nutrition, Rare Disease Week, Research and Study Opportunities | 10 Mar 2026 | 00:29:21 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400
Pulse Header Nutrition Discourse in the PWS Community - Prader-Willi Syndrome Association | USA Nutrition in the PWS Family - Prader-Willi Syndrome Association | USA Resources: Diet and Nutrition - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Swallowing in Prader-Willi Syndrome Share Your Rare Story - Prader-Willi Syndrome Association | USA Events | Fundraisers Prader Silly: A Night of Rare Laughs - Campaign Events from March 21, 2020 – September 12, 2020 – Prader-Willi Syndrome Association | USA PWSA Fundraising Pages - Campaign Podcast Ep82: Kady Sweeney: See the Potential, Savor Typical Moments | PWS United Advocacy Rare Disease Advocacy in the PWS Community - Prader-Willi Syndrome Association | USA Reflections from Rare Disease Week on Capitol Hill 2026 - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Family Support Play-based Assessment for Preschoolers: If you have questions, please email neurodevelopmentresearchlab@gmail.com or call 216-368-0112. Visit the website at https://caslabs.case.edu/dimitropouloslab/. Fill out the eligibility form at PRETEND Program for Preschoolers Eligibility Form Ask Nurse Lynn: Nutrition Guidelines and a Group Home - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA Response to Anesthetic Survey: REDCap Social cognition study: If you have questions, email neurodevelopmentreasearchlab@gmail.com or call 216-368-0112. Submit interest at Assessing Play & Creativity Study - Interest Form TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today
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. | |||
| Ep82: Kady Sweeney: See the Potential, Savor Typical Moments | 03 Mar 2026 | 00:33:12 | |
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 Dorothea Lantz, PWSA | USA's Director of Community Engagement and mom to Hunter, living with PWS. She spoke with Kady Sweeney, sister to Klara (15, living with PWS). Kady shares the memory of when she realized PWS was not a typical experience. Finding the moments to laugh and the importance of the typical moments with a loved one with PWS. Kady's mission is for people outside of the rare disease community to recognize the potential of individuals with PWS. She also shares her vision of the future for her sister and others with PWS and how she plans to be a part of it. Learn more about Prader-Willi syndrome and PWSA | USA at
Intro Music: https://www.bensound.com/ License certificate #2242442 | |||
| Ep81 Pulse 141: Caregivers Day, Voices on Vykat, Board Member Spotlights | 24 Feb 2026 | 01:00:12 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400
Pulse Header National Caregivers Day: The Real Job Description - Prader-Willi Syndrome Association | USA Spotlight on PWS "Uncle Dan" Helping to Feed the Community - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight PWS - Rare Disease Day - Prader-Willi Syndrome Association | USA Share Your Rare Story - Prader-Willi Syndrome Association | USA Events | Fundraisers PWS Community Day Registration (North Carolina) Survey PWSA Fundraising Pages - Campaign Podcast Ep80: What's in Store for PWSA | USA in 2026? | PWS United Advocacy Family Support Why It Matters to Belong and It’s Important to Matter - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Recovery and Weight Loss After Surgery - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research HERO Trial Webinar: Webinar Registration - Zoom TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today Announcements PWSA | USA Board of Directors Member Spotlight: Dini Rao - 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. | |||
| Ep80: What's in Store for PWSA | USA in 2026? | 17 Feb 2026 | 00:25:24 | |
In this New Year kickoff episode of PWS United, we're sharing an inside look at what’s in store for PWSA | USA in 2026. After reflecting on the organization’s momentum coming out of its 50th Anniversary year, our podcast co-host Carrie interviews several staff members to ask one simple question: What are you most excited about working on this year? Listeners will hear highlights about upcoming programs, expanding resources, social media initiatives, community events, and the passion fueling the work ahead. This episode offers a preview of the plans, priorities, and people dedicated to supporting individuals with Prader-Willi syndrome and their families in the year to come. Episode Links: Adults with PWS Advisory Board webpage PWS Spanish Support Group: PWSA | USA Apoyo en Espaol 2026 Residential Providers Conference PWS Rare Aware Art Share - Submissions due by March 15th! PWS Hope United Peer-to-Peer Fundraising Contact us if you're interested in hosting an event in 2026: hopeunited@pwsausa.org Intro Music: https://www.bensound.com/ License certificate #2242442 Other Music: Purple Planet Music | Moment of Inspiration | |||
| Ep79 Pulse 140: Residential Providers, Plunge for PWS, PRV Win, Feeding Tubes | 10 Feb 2026 | 00:35:40 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400
Pulse Header Residential Providers Conference - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight PWS Rare Disease Day-15 Ways to Raise Awareness Share Your Rare Story - Prader-Willi Syndrome Association | USA Events | Fundraisers Email Anne at africke@pwsausa.org to be challenged. Family Zoo Day - Miami | Prader-Willi Florida Association PWSA Fundraising Pages - Campaign Podcast Ep78: Miriam Chernick: Educating the Community | PWS United Home - Global Prader-Willi Syndrome Registry Advocacy Official Super Bowl 60 Game Program PWA of PA Member Questionnaire Family Support PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Behavior and Medications for Adults - 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 Announcements/Resource Spotlight Stephanie Elizabeth Pircher Obituary (2026) - Windsor, MO - Hadley Funeral Home - Windsor
Intro Music: https://www.bensound.com/ License certificate #2242442
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.
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| Ep78: Miriam Chernick: Educating the Community | 03 Feb 2026 | 00:35:15 | |
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. Elaine spoke with sibling and author, Miriam Chernick. Miriam's brother, Daniel, is 69 and living with PWS. She spoke with Elaine about her relationship with her brother and how that has changed over the years, deciding when to speak up for him and when to let him speak up for himself, her concerns for his aging, and how she sees sibling advocacy as educating the community. She also talks briefly about her book, The Zuzu Secret. The Zuzu Secret "told in alternating points of view, is about Josie, a 12-year-old aspiring veterinarian, and Abe, her 15-year-old baseball-loving brother born with a rare disease called Prader-Willi syndrome, as they learn the risks of keeping secrets and the value of family while staying true to their dreams." Use the link to learn more and purchase your copy of The Zuzu Secret: | |||
| Ep77: Limits, Perspective, and Mental Wellness | 27 Jan 2026 | 00:56:40 | |
This episode focuses on mental wellness, with guest Denise Rickenbach MA LMFT LADC. Denise is an Adlerian-trained Licensed Marriage and Family therapist as well as a Licensed Alcohol and Drug Counselor (LADC). Denise’s interests include addiction, codependency, family systems, anxiety, depression, obsessive compulsive disorder, grief, life transitions, and strained relationships. She was a speaker at the 2025 United in Hope conference and is the sister of PWSA | USA's beloved family support coordinator – Kristi Rickenbach. Kristi and Denise both joined Carrie and Anne on this episode on mental wellness to talk about what addictive behavior may look like and why parents of individuals with disabilities are perhaps more likely to develop these. They also discuss caregiver burden, setting limits – why and how, negative comparison vs perspective taking, disenfranchised grief, and more. Links to resources mentioned in the podcast: Caregiver Burden and Alcohol Use in a Community Sample - PMC The Michelle Chalfant Show — Life from the Adult Chair - Podcast - Apple Podcasts The Anxious Generation — from a book to a movement Addiction Expert, Speaker and Best-selling Author Dr. Gabor Maté | |||
| Ep76 Pulse 139: Art Share Launch, Social Media Use, Voices on VYKAT Testimonial | 21 Jan 2026 | 00:49:01 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400
Rare Aware Art Share PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Events | Fundraisers Clint Hurdle Hot Stove Dinner Hub - Prader-Willi Syndrome Association | USA PWSA Fundraising Pages - Campaign Podcast Ep75: Global PWS Registry 2.0 | PWS United Home - Global Prader-Willi Syndrome Registry Advocacy D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA Rare Disease Week - EveryLife Foundation for Rare Diseases Colors of Hope: Webinar Registration - Zoom Family Support How Individuals with PWS Can Use Social Media Safely - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Hemoglobin Levels - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Prader-Willi Syndrome and VYKAT™ XR (diazoxide choline) Shedding Light on Sleep Disorders in Prader-Willi Syndrome | January 29, 2026 Announcements/Resource Spotlight
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. | |||
| Ep75: Global PWS Registry 2.0 | 13 Jan 2026 | 01:06:24 | |
The Global PWS Registry, sponsored by FPWR and hosted by NORD, is a database of information about individuals with Prader-Willi syndrome. Informed by caregivers of individuals with PWS, the Global PWS Registry, now in its 10th year, is one of the most powerful tools we have to understand PWS. The registry has guided research, played a crucial role in advancing new drugs and therapies, shaped clinical trials, informed medical guidelines, and has helped elevate the voices of the PWS community. Stacy Ward, PWSA | USA's CEO, sat down with key figures of the Global PWS Registry; Dr. Theresa Strong, Director of Research for FPWR, Dr. Jessica Bohonowych, Associate Director of Research for FPWR, Lisa Matesevak, Study Coordinator for FPWR, and Lynn Garrick, Medical/Research Coordinator for PWSA | USA. They discussed the many surveys available and the importance of gathering this data from families. Not only are these surveys helping to inform the medical and research community on the many nuances of PWS, but it can also serve as a living medical record for families. The Global Registry has been updated to a more intuitive platform, making it easier for families to complete surveys and view the information submitted by the community. They also discuss the exciting implications for the upcoming VYKAT survey which will help document in real-time the effects of the first-ever FDA approved treatment for hyperphagia in PWS. To learn more and sign up for the registry, please visit Home - Global Prader-Willi Syndrome Registry If you have questions, contact Lisa Matesevak or Jessica Bohonowych at info@fpwr.org | |||
| Ep74 Pulse138: DC Fly In Applications, Mental Wellness, Save the Dates for 2026 | 06 Jan 2026 | 00:25:35 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400
Events | Fundraisers D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA 2026 Residential Providers Conference - Prader-Willi Syndrome Association | USA 2026 Moms' Retreat - Prader-Willi Syndrome Association | USA 2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA PWSA Fundraising Pages - Campaign Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Angel Drive Hope in Action: Where Community Becomes Family — Annie’s Story Podcast Ep73: Stacy's End of Year Message | PWS United Advocacy Rare Disease Week - EveryLife Foundation for Rare Diseases Family Support Sibling Spotlight: Ella Frazier’s Heart for Service - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: PWS BMI Ranges - Prader-Willi Syndrome Association | USA PWS Rare Aware Art Share - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research PWSA | USA’s 2025 Research Year in Review - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight Exercise, Movement, and Mental Health - Prader-Willi Syndrome Association | USA
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| Ep73: Stacy's End of Year Message | 30 Dec 2025 | 00:10:50 | |
2025 was a year of growth, innovation, and strengthened commitment. We expanded family support, enhanced clinical and crisis services, grew our advocacy and education efforts, and continued advancing critical research. This episode is a message from PWSA | USA CEO Stacy Ward about the incredible work done by PWSA | USA staff, volunteers, and supporters throughout this past year, along with our deep and heartfelt gratitude. Intro Music: https://www.bensound.com/ License certificate #2242442 Music: www.purple-planet.com | |||
| Ep72 Pulse 137: End of Year Reflection, Holiday Traditions and Tips, Clinical Trial Wrap-Up | 23 Dec 2025 | 00:35:02 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Angel Drive Angel Drive 2025 - Prader-Willi Syndrome Association | USA PWSA Memory PWSA Library - Prader-Willi Syndrome Association | USA Events | Fundraisers Family Zoo Day - Miami - Prader-Willi Syndrome Association | Florida Inicio - Asociación del Síndrome de Prader-Willi | Florida Claus for a Cause Thank You Message PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Podcast Ep71: Christian Garzia: Humor, Fairness, and Protection | PWS United Advocacy Family Support Adapting Holiday Traditions for Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Group Home Placement - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Reflections on the End of a Trial - Prader-Willi Syndrome Association | USA Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight Tips and Techniques for a Safe Holiday Season - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/ License certificate #2242442 | |||
| Ep71: Christian Garzia: Humor, Fairness, and Protection | 16 Dec 2025 | 00:22:33 | |
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 Dorothea Lantz, PWSA | USA's Director of Community Engagement and mom to Hunter, living with PWS. Dorothea spoke with 15-year-old Christian Garzia, the younger brother of Rocco, a 21-year-old living with PWS. Christian brings some humor to this conversation and talks about what fairness looks like in their family dynamic, why he's not worried about the future with Rocco, and how advocacy looks like protection. Learn more about Prader-Willi syndrome and PWSA | USA at | |||
| Ep70 Pulse 136: In Memory of Fausta, Give Kids a Chance Act, HERO Study Expansion, PWS Relationships Study | 09 Dec 2025 | 00:28:27 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Angel Drive Angel Drive 2025 - Prader-Willi Syndrome Association | USA PWSA Memory 1997_Vol-XXII-N4-Sept-1997.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers Claus for a Cause Thank You Message PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Podcast Ep69: Joe Gill: Inclusion, Purpose, and the Little Things | PWS United Advocacy Family Support Adoption Spotlight for Santino, contact: eschmitt@chomepgh.org or 412-441-4484 Ask Nurse Lynn: Testosterone and Low LH - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research HERO Study for Treatment of Hyperphagia in PWS PWS-PARTICIPANTS-NEEDED.pdf Flyer for adult with PWS relationship study Pre-screening Survey for adults with PWS for relationship study Eligibility Screening for Hyperphagia study: survey.alphadetail.com/wix/5/p867000759655.aspx?refby=medp Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight Holiday Gift Ideas: Sensory Edition - Prader-Willi Syndrome Association | USA
Intro Music: https://www.bensound.com/ License certificate #2242442 | |||
| Ep69: Joe Gill: Inclusion, Purpose, and the Little Things | 02 Dec 2025 | 00:40:44 | |
Welcome to another episode in our podcast series, Sibling Advocacy, where we speak with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them. Today's episode, hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS, is with Joe Gill. Joe is the older brother of Gavin, an almost 20-year-old living with PWS. Joe talks about growing up with PWS in the house, what inclusion looks like for Gavin, the need for opportunities for adults, and offers some advice for other siblings on this journey. In 2022, as part of raising funds and awareness, Joe ran the Boston Marathon. With a diagnosis as challenging as PWS can be, we hope families will find this episode, and this series, refreshing and insightful. Thank you to all the siblings advocating and showing up for their loved one with PWS! Learn more about Prader-Willi syndrome and PWSA | USA at www.pwsausa.org
Intro Music: https://www.bensound.com/ License certificate #2242442
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| Ep68 Pulse 135: Holiday Preparation, Prader Silly Recap, 2026 D.C. Fly-In, PWS and Diabetes, Research Spotlight | 25 Nov 2025 | 01:00:28 | |
The latest in PWSA | USA events and PWS news in advocacy, family support, and research. 24-Hour Crisis Line: (941) 312-0400 - Available 24/7, including Holidays. Preparing for the Holidays Blogs/Resources: Tips and Techniques for a Safe Holiday Season Cousins at Christmas: Opening the Conversation of Your Child’s Special Needs A Letter to Friends and Family PWSA Memory: September 1997 edition of The Gathered View Spotlight on Hope: 2025 Angel Drive Campaign: Hope in Action Video - Shaping the Future of PWS Save the Date: Giving Tuesday is Tuesday, December 2, 2025 - DOUBLE your impact when you give to the Angel Drive on that date! PWS Christmas Experience near PDX: Email pwsaorwa@gmail.com by December 3, 2025 to RSVP. Prader Silly: Event Photo Gallery (Photo credit: Taylor Brown | @word.doc_brown) Claus for a Cause: Register for Claus for a Cause Bid on Claus for a Cause Silent Auction Items D.C. Fly-In - Applications for the 2026 D.C. Fly-In will open soon! For questions, email advocacy@pwsausa.org. To sponsor this event, email development@pwsausa.org. Operation Holiday Cheer Click Here to Submit an Application Deadline to submit an application is Monday, December 1, 2025. Email info@pwsausa.org with any questions. Prader-Willi Syndrome and Diabetes Click Here to Read the Blog Article ¡Anuncio! Nuevo Grupo de Apoyo en Español Ask Nurse Lynn PWS and Aging Response Article Submit Your Own Non-Emergency Question about PWS TREND Community and PWS Connect on Discord Join the conversation today! Interested? Email interested@trend.community and we’ll send you a private link to join PWS Connect on Discord! Research Spotlight Harmony Biosciences TEMPO PWS Clinical Trial PWSA | USA Resource Spotlight Intro Music: https://www.bensound.com/ License certificate #2242442
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| Ep67: Broken Systems, Enduring Love, Single Caregivers Series | 18 Nov 2025 | 00:55:08 | |
Carrie and Anne spoke with two single caregivers, Annie, mom to Adebu who is 36, and Lon, dad to Max who is 31. Both Adebu and Max are living with PWS. This conversation dives into some challenging and very real aspects of caring for an adult with PWS. Some of it relates directly to single parents of individuals with PWS, and some of it to the cracks and growing lesions in the support systems for adults with disabilities. This is an important and beautiful episode, for its rawness, the vulnerability and willingness of the parents to share their stories, and the reality of the challenges they face when it comes to employment, relationships, obtaining services, and mental health which Annie says is, “the hidden casualty of my life.” Please listen with care: If you are caregivers for young individuals with PWS, this episode is likely not for you. It is important to remember that PWS affects each family differently and that the landscape of treatments and services continues to change. For more information on Prader-Willi syndrome, please visit www.pwsausa.org 24 Hour Crisis Line: 941-312-0400 Intro Music: https://www.bensound.com/ License certificate #2242442 | |||
| Ep66 Pulse 134: Angel Drive Launch, Operation Holiday Cheer, Skin Picking, Self-Care, Gratitude | 11 Nov 2025 | 00:36:21 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Angel Drive Angel Drive 2025 - Prader-Willi Syndrome Association | USA Hope in Action: Adults with PWS Advisory Board Members Share the Importance of Self-Advocacy PWSA Memory 1993_Vol-XVII-N5-Sept-Oct-1993.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers PWSA Fundraising Pages - Campaign Spotlight on Hope Spotlight on Hope: The Story of George - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Calling Iowa PWS Families for P&T Committee - Prader-Willi Syndrome Association | USA Calling Alaska PWS Families - Prader-Willi Syndrome Association | USA Understanding P&T Committees and DUR Boards - Prader-Willi Syndrome Association | USA Wisconsin Families: We Need Your Voice to Support SB 203 - Prader-Willi Syndrome Association | USA Family Support Respite & Relationship: PWS Moms’ Hiking Weekends - Prader-Willi Syndrome Association | USA Community Collectives: Creating Support for Caregivers - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Preventing and Treating Constipation - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research 2025_11_03_Whats-TRENDing-Community-Themes-and-PWS.pdf TREND Community - Prader-Willi Syndrome Association | USA Aardvark Therapeutics' HERO Clinical Trial Informational Webinar - October 15, 2025 Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Request for Prader-Willi Syndrome Research Grant Applications Announcements/Resource Spotlight
Intro Music: https://www.bensound.com/ License certificate #2242442 | |||
| Ep65: Grit, Grace, and Family, Single Caregivers Series | 04 Nov 2025 | 00:45:06 | |
On today’s episode, the PWS United podcast team spoke with two moms, Mandy Kemp, mom to Samantha (5, living with PWS) and Lynn Garrick, mom to John (almost 20, living with PWS). Some of what is discussed will resonate with many families, whether or not you’re a single caregiver, and other points speak directly to issues of being a single caregiver, like carrying the mental load all day every day, isolation, trusting others to care for your loved one so you may find a piece of yourself again, or simply finding time for a much-needed nap. They also talk about how and why to give yourself grace, adapting the in-home culture to fit the needs of the family and having pride in what is created. This episode is the first of our mini-series focusing on single caregivers, and it’s a beautiful, insightful look into a few of the many ways families are formed.
Links: Love Is a Family book by Roma Downey Love Is a Family: Downey, Roma: 9780060393748: Amazon.com: Books | |||
| Ep64: Henry McDonald: Dynamic Duo, Superhero | 28 Oct 2025 | 00:33:19 | |
The next episode in our podcast series, Sibling Advocacy, where we will be speaking with siblings about how they show up for their loved one with PWS, whether at the kitchen table, at school, in friend groups or government, or any place where their sibling may need them. Today's episode, led by Dorothea Lantz, PWSA | USA Director of Community Engagement, is with Henry McDonald, the older sibling of Josie (living with PWS). Henry is an insightful 14-year-old who refers to him and his sister as the "dynamic duo". He shares his perspective on PWS, how it affects the whole family, and how misinformation isn't a problem when the issue is actually a lack of information. Henry also shares candidly what it was like to advocate for Josie in a political arena, attending therapy appointments with her when he was younger, his thoughts about the future, and more. With a diagnosis as challenging as PWS can be, we hope families will find this episode, and this series, refreshing and insightful. Thank you to all the siblings advocating and showing up for their loved one with PWS! Learn more about Prader-Willi syndrome and PWSA | USA at www.pwsausa.org
Intro Music: https://www.bensound.com/ License certificate #2242442 | |||
| Ep63: Nile Hope Workshop and Camp, Department of Education Layoffs, Prader Silly Live Auction | 21 Oct 2025 | 00:36:45 | |
Ep63 Pulse 133: Nile Hope Workshop and Camp, Department of Education Layoffs, Prader Silly Live Auction The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Prader-Silly Live Auction Prader Silly: A Night of Rare Laughs PWSA Memory Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Dr. Destiny Pacha on Instagram: Dr. Destiny Pacha (@_empowered_solutions) • Instagram photos and videos Dr. Destiny Pacha on Facebook: EmpowerED Solutions | Facebook Family Support Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Request for Prader-Willi Syndrome Research Grant Applications Announcements/Resource Spotlight Dental-Health-in-Children-and-Adults-with-PWS.pdf
Intro Music: https://www.bensound.com/ License certificate #2242442
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| Ep62: Teaching Emotional Regulation in Individuals with PWS: ABA Strategies for Lasting Success | 14 Oct 2025 | 00:58:45 | |
Link to session material: Emotional Regulation Strategies This episode is from a session from our International United in Hope PWS Conference and was recorded on June 28, 2025. ”Teaching Emotional Regulation in Individuals with Prader-Willi Syndrome: ABA Strategies for Lasting Success,” was presented by Kasey Bedard, PhD, BCBA-D assistant professor at The Chicago School. Kasey discusses why emotional regulation is challenging for people with PWS, why tantrums occur, self-regulation vs co-regulation, how to teach emotional regulation skills, and more. This episode is another great resource for families and caregivers of individuals living with Prader-Willi syndrome. To learn more about PWS please visit www.pwsausa.org. Intro Music: https://www.bensound.com/ License certificate #2242442 | |||
| Ep61 Pulse 132: Gala Recap, DUR Boards, TREND Journey Prompts, Bullying Prevention Month | 07 Oct 2025 | 00:30:01 | |
The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Gala Tribute Video: Celebrating 50 Years of PWSA | USA! PWSA | USA's Journey of Hope Gala Photo Gallery PWSA Memory 1987_Vol-XIII-N4-Jul-Aug-1987.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers 2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | USA PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Calling Missouri PWS Families! - Prader-Willi Syndrome Association | USA Calling Indiana PWS Families! - Prader-Willi Syndrome Association | USA Understanding P&T Committees and DUR Boards - Prader-Willi Syndrome Association | USA Family Support Intervening with a Bully, One Family’s Experience - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Stretch Marks with Estradiol - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research TREND Community - Prader-Willi Syndrome Association | USA 2025-Whats-TRENDing-Birth-Stories-and-PWS.pdf Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA HERO Informational Webinar Registration: Webinar Registration - Zoom Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Request for Prader-Willi Syndrome Research Grant Applications Announcements/Resource Spotlight Therapeutic-Interventions-2011.pdf Intro Music: https://www.bensound.com/ License certificate #2242442 | |||