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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

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

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 [email protected]   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.

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 [email protected]

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 

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

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 Stacy’s Thank You Message Hope in Action - YouTube 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 A Bow for Áine Mirella: A Night of Music, Joy, and Hope for Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA 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 PWSA | USA at the EveryLife Community Congress: Looking Back at 2025 and Mobilizing for 2026 - Prader-Willi Syndrome Association | USA Family Support Adapting Holiday Traditions for Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA Melanie's Air-Fryer Chanukah Latkes (PWS-Friendly Potato Pancakes) - 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 

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 www.pwsausa.org

The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 In Loving Memory of Fausta Deterling, Co-Founder of PWSA | USA - Prader-Willi Syndrome Association | USA Angel Drive Angel Drive 2025 - Prader-Willi Syndrome Association | USA Stacy’s Thank You Message Hope in Action: Carol's Story 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 Spotlight on Hope: Sharon, Leora Saacks Share Loved One Andrea's Journey with PWS - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Podcast Ep69: Joe Gill: Inclusion, Purpose, and the Little Things | PWS United Advocacy A Milestone for Hope: U.S. House Passes the Give Kids a Chance Act - Prader-Willi Syndrome Association | USA Family Support Reflections from PWSA | USA’s Visit to PANTHERx Rare Pharmacy - Prader-Willi Syndrome Association | USA Adoption Spotlight for Santino, contact: [email protected] 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 New Research Study Seeks Caregiver Insights on Hyperphagia in PWS - Prader-Willi Syndrome Association | USA    Eligibility Screening for Hyperphagia study: survey.alphadetail.com/wix/5/p867000759655.aspx?refby=medp Screening Questionnaire for the Study Titled: The Effects of a Caregiver-Implemented Power Card Strategy on Social Play Skills in Children with Prader-Willi Syndrome | QuestionPro Survey 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 

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   

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: Celebrate Thanksgiving Safely 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: Share your submission! 2025 Angel Drive Campaign: Click Here to Make an Impact 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 [email protected] 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 Donate to Claus for a Cause D.C. Fly-In - Applications for the 2026 D.C. Fly-In will open soon! For questions, email [email protected]. To sponsor this event, email [email protected]. Operation Holiday Cheer Click Here to Submit an Application Deadline to submit an application is Monday, December 1, 2025. Email [email protected] with any questions. Prader-Willi Syndrome and Diabetes Click Here to Read the Blog Article ¡Anuncio! Nuevo Grupo de Apoyo en Español Únete Aquí Ask Nurse Lynn PWS and Aging Response Article Submit Your Own Non-Emergency Question about PWS TREND Community and PWS Connect on Discord Click Here to Learn More Join the conversation today! Interested? Email interested@tren​d.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 Central Adrenal Insufficiency Screening with Morning Plasma Cortisol and ACTH Levels in Prader-Willi syndrome Intro Music: https://www.bensound.com/  License certificate #2242442   

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 

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 Claus for a Cause - Campaign 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 Operation Holiday Cheer Returns to Support PWS Families in 2025 - Prader-Willi Syndrome Association | USA 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 Strategies, Interventions, and Routines for the Prevention or Mitigation of Skin Picking in Individuals with Prader-Willi Syndrome   Intro Music: https://www.bensound.com/  License certificate #2242442 

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: Libby - Welcome Love Is a Family book by Roma Downey Love Is a Family: Downey, Roma: 9780060393748: Amazon.com: Books

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