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Recent episodes
Ep98 Pulse 149: Events for Moms and Dads, Convention Registration, VYKAT Testimonial
Jun 23, 2026
41m 30s
Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission
Jun 16, 2026
40m 56s
Ep96 Pulse 148: Preparing for Summer, Awareness Month Gratitude, Getting Involved in Research
Jun 9, 2026
29m 02s
Ep95 Garrick Siblings: Importance of Community and Listening
Jun 2, 2026
35m 37s
Ep94 Advocacy is Everything: 2026 DC Fly-In Recap
May 26, 2026
43m 02s
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| Date | Episode | Description | Length | ||||||
|---|---|---|---|---|---|---|---|---|---|
| 6/23/26 |  Ep98 Pulse 149: Events for Moms and Dads, Convention Registration, VYKAT Testimonial | The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Pulse Header 2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA Caribe Royale Resort | Resort in Orlando Florida | Official Site Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight How To Travel with Refrigerated Medication - PWSA USA Events | Fundraisers Mom’s Hike: 2026 Event Series pwshikingmom@gmail.com Home - DADventure Retreat PWSA Events Podcast Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission | PWS United Advocacy Advocacy & Awareness - Prader-Willi Syndrome Association | USA Family Support Appreciation for Fathers and How They Show Up for PWS - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Anesthesia and Steroids - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA Announcements PWSA | USA Board of Directors Member Spotlight: John Lens - Prader-Willi Syndrome Association | USA Intro Music: https://www.bensound.com/ License certificate #2242442 Music: www.purple-planet.com Disclaimer for show notes: This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects. | 41m 30s | ||||||
| 6/16/26 |  Ep97 Father's Day Special: Two PWS Dads, Two Events, One Powerful Mission | 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 TournamentSaturday, September 19, 2026 | Heritage Hills Golf Course, Lakeville, MALearn more and register at: https://give.pwsausa.org/event/hunter-lens-golf-tournament/e791873 Clint Hurdle Hot Stove DinnerSave the Date! Saturday, March 20, 2027 | Bradenton, FLRegistration details coming soon at pwsausa.org. | 40m 56s | ||||||
| 6/9/26 |  Ep96 Pulse 148: Preparing for Summer, Awareness Month Gratitude, Getting Involved in Research | 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. | 29m 02s | ||||||
| 6/2/26 |  Ep95 Garrick Siblings: Importance of Community and Listening | 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 | 35m 37s | ||||||
| 5/26/26 |  Ep94 Advocacy is Everything: 2026 DC Fly-In Recap | 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 2026-Hill-Day-Ask-Document-KASSA.pdf Facebook Voices That Move Policy: Recapping PWSA | USA's 2026 D.C. Fly-In - Prader-Willi Syndrome Association | USA Can't Make It to D.C.? Here's How to Advocate From Home During PWSA | USA's 2026 Fly-In - Prader-Willi Syndrome Association | USA | 43m 02s | ||||||
| 5/19/26 |  Ep93 Pulse 147: PWS Awareness Day, D.C. Fly-In Recap, Voices on VYKAT 5 | 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 Share Your Spotlight on PWS PWS Awareness Month Hummus & Watermelon United We Brunch Event - May 31, 2026 | Omaha, NE PWS Awareness Month Hub 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! Colors of Hope Webinar - Advocating as a Person of Color in the Rare Disease Space (May 28 | 8 PM ET) RSVP to: bipocpws@gmail.com Advocacy in New Hampshire: RDAC Appointment of Melanie Zalman, Awareness Day Proclamation - PWSA | USA Blog Calling Kansas PWS Families - PWSA | USA Blog Family Support PWS Roadshow Connects Families in Bellingham for Life-Changing Outreach Event - PWSA | USA Blog More PWS Roadshow Events 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 Aardvark Therapeutics Plans to Unblind HERO and OLE Data to Inform Path Forward Following FDA Clinical Hold Free CME! The Missing Piece in the Prader-Willi Puzzle: Optimizing Transitions of Care and Patient Quality of Life 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. | 48m 29s | ||||||
| 5/12/26 |  Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues | 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 | 49m 29s | ||||||
| 5/5/26 |  Ep91 PWS Awareness Month is Here: How to Get Involved | 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: communications@pwsausa.org Advocacy@pwsausa.org development@pwsausa.org info@pwsausa.org Helpful links: PWS Awareness Month Hub PWSA | USA on Facebook PWSA | USA on Instagram 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 Advocacy & Awareness Webpage 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 | 52m 06s | ||||||
| 4/28/26 |  Ep90 Staying Curious: Continuing the Equity Conversation | 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. | 1h 00m 50s | ||||||
| 4/21/26 |  Ep89 Pulse 145: PWS Awareness Month, DC Fly-In, Voices on VYKAT 4, Autism Blog | The latest in PWSA | USA events and PWS news in research, family support, and advocacy. 24 Hour Crisis Line: 941-312-0400 Pulse Header Celebrating Occupational Therapy Month: How OT Builds Confidence, Comfort, and Skills for Life - Prader-Willi Syndrome Association | USA 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 United in Action - Campaign Events | Fundraisers Magnolias & Mimosas - Campaign PWS Community Day Registration (Miami) Survey Miami_PWS_Community_Day_Digital_Invite.pdf PWSA Events 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 Living Between Diagnoses: Hunter’s Journey with Prader-Willi Syndrome and Autism - Prader-Willi Syndrome Association | USA 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. | 49m 25s | ||||||
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| 4/14/26 |  Ep88: What is a Rare Pharmacy? How PWS Families Receive Care Through PANTHERx | 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 About VYKAT XR 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 | 42m 23s | ||||||
| 4/7/26 |  Ep87: Pulse 144: Conference Scholarships, Sibling Blog, VYKAT Approval Anniversary | 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 PWSA Events 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 Ask Nurse Lynn: Behavioral Outbursts and Psychiatric Support - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research A Message from Soleno Therapeutics: Reflecting on One Year of VYKAT XR - Prader-Willi Syndrome Association | USA 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. | 25m 44s | ||||||
| 3/31/26 |  Ep86: Homeschooling, The Ins and Outs of Educational Choice | 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. | 58m 05s | ||||||
| 3/24/26 |  Ep85: Pulse 143 Hot Stove, Disordered Sleep, Voices on Vykat 3 | 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 Solidarity & Spice - Campaign You're Invited to Solidarity & Spice: A Message from Dini Rao PWANY 2026 Conference 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 Finding a Viable Treatment for Excessive Daytime Sleepiness Through the TEMPO Trial - Prader-Willi Syndrome Association | USA 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 The FOCUS project PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA Announcements PWSA | USA Board of Directors Member Spotlight: Tina Ihlenfeld - 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. | 39m 50s | ||||||
| 3/17/26 |  Ep84: Welcoming PWSA | USA's Equity Committee | 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 | 51m 32s | ||||||
| 3/10/26 |  Ep83 Pulse 142: Nutrition, Rare Disease Week, Research and Study Opportunities | 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 NUTRITIONAL-PHASES.pdf 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 We're Here: Then, Now, Always! Developmental Disabilities Awareness Month - Prader-Willi Syndrome Association | USA 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 Aardvark Therapeutics Announces Voluntary Pause of Phase 3 HERO Trial in Prader-Willi Syndrome – Fri, 02/27/2026 - 16:05 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. | 29m 21s | ||||||
| 3/3/26 |  Ep82: Kady Sweeney: See the Potential, Savor Typical Moments | 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 www.pwsausa.org Intro Music: https://www.bensound.com/ License certificate #2242442 | 33m 12s | ||||||
| 2/24/26 |  Ep81 Pulse 141: Caregivers Day, Voices on Vykat, Board Member Spotlights | 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 Donate to Mermaid Marathon PWSA Fundraising Pages - Campaign Podcast Ep80: What's in Store for PWSA | USA in 2026? | PWS United Advocacy Underserved People in the PWS Community: Who Are They and How Can We Help? - Prader-Willi Syndrome Association | USA Home | Colors Of Hope 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: Jeffrey Covington - Prader-Willi Syndrome Association | USA 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. | 1h 00m 12s | ||||||
| 2/17/26 |  Ep80: What's in Store for PWSA | USA in 2026? | 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 2026 Moms' Retreat 2026 D.C. Fly-In 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 | 25m 24s | ||||||
| 2/10/26 |  Ep79 Pulse 140: Residential Providers, Plunge for PWS, PRV Win, Feeding Tubes | 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 Plunge for PWS - Campaign Email Anne at africke@pwsausa.org to be challenged. Family Zoo Day - Miami | Prader-Willi Florida Association PWSA | USA EVENTS Webpage PWSA Fundraising Pages - Campaign Podcast Ep78: Miriam Chernick: Educating the Community | PWS United Home - Global Prader-Willi Syndrome Registry Advocacy Congress Passes Five-Year Reauthorization of the Rare Pediatric Disease PRV Program! - Prader-Willi Syndrome Association | USA Official Super Bowl 60 Game Program PWSA | USA and Soleno Therapeutics Take PWS Awareness to the Super Bowl - Prader-Willi Syndrome Association | USA PWA of PA Member Questionnaire Family Support Nasogastric and Gastric Feeding Tubes: What, Why, and When They Are Needed - Prader-Willi Syndrome Association | USA 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. | 35m 40s | ||||||
| 2/3/26 |  Ep78: Miriam Chernick: Educating the Community | 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: The Zuzu Secret Novel for Elementary and Middle Grade - Beardies, Prader-Willis Syndrome, Baseball — Miriam Chernick - Author & Educator | 35m 15s | ||||||
| 1/27/26 |  Ep77: Limits, Perspective, and Mental Wellness | 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 | 56m 40s | ||||||
| 1/21/26 |  Ep76 Pulse 139: Art Share Launch, Social Media Use, Voices on VYKAT Testimonial | 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 Rare Aware Art Share Back for 2026: PWS Advocacy and Awareness - Prader-Willi Syndrome Association | USA 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 | USA EVENTS Webpage PWSA Fundraising Pages - Campaign Podcast Ep75: Global PWS Registry 2.0 | PWS United Home - Global Prader-Willi Syndrome Registry Advocacy PWSA | USA and Soleno Therapeutics Take PWS Awareness to the Super Bowl - Prader-Willi Syndrome Association | USA D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA Rare Disease Week - EveryLife Foundation for Rare Diseases Rare Disease Week 2024 Colors of Hope: Webinar Registration - Zoom PWSA NJ Registry Update 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 Harmony Biosciences Guides to Over $1 Billion in WAKIX® Revenue in 2026; Advancing Robust Late-Stage Pipeline With Potential for Long-term Value Creation | Harmony Biosciences Prader-Willi Syndrome and VYKAT™ XR (diazoxide choline) Shedding Light on Sleep Disorders in Prader-Willi Syndrome | January 29, 2026 TREND Connect Announcements/Resource Spotlight info@pwsausa.org 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. | 49m 01s | ||||||
| 1/13/26 |  Ep75: Global PWS Registry 2.0 | 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 | 1h 06m 24s | ||||||
| 1/6/26 |  Ep74 Pulse138: DC Fly In Applications, Mental Wellness, Save the Dates for 2026 | 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 Hope in Action - YouTube Podcast Ep73: Stacy's End of Year Message | PWS United Advocacy Rare Disease Week - EveryLife Foundation for Rare Diseases Rare Disease Week 2024 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 Intro Music: https://www.bensound.com/ License certificate #2242442 | 25m 35s | ||||||
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