PWS United

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

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: [email protected] [email protected] [email protected] [email protected]   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 [email protected]. 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 

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.

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.   

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   

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 [email protected] 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.

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.

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.

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  

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 [email protected] 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 [email protected] 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.

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 

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.

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: [email protected]   Intro Music: https://www.bensound.com/  License certificate #2242442 Other Music: Purple Planet Music | Moment of Inspiration

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 [email protected] 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.  

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 

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 2001_Vol-26-N5.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events | Fundraisers Golf | The RMC Foundation PWSA Fundraising Pages - Campaign Spotlight on Hope A Halloween Party with Heart: Dancing Silly for Prader-Willi - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Cuts to Department of Education Affect Individuals with PWS – Call to Action! - Prader-Willi Syndrome Association | USA Dr. Destiny Pacha on Instagram: Dr. Destiny Pacha (@_empowered_solutions) • Instagram photos and videos Dr. Destiny Pacha on Facebook: EmpowerED Solutions | Facebook Family Support PWS Families Gather in Egypt for Nile Hope Workshop and Camp - Prader-Willi Syndrome Association | USA PWS-Community-Day-Invite.pdf PWS Community Day Survey Ask Nurse Lynn: New Forgetfulness and Neurological/Psychological Concerns - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Enrolling now VNS4PWS 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   

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 

The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Gala Journey of Hope Gala Recap: Celebrating 50 Years of PWSA | USA - Prader-Willi Syndrome Association | USA 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 Acadia Shares Results of Phase 3 Carbetocin Trial: Primary Endpoint Not Met - Prader-Willi Syndrome Association | USA Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA www.heroforpws.com HERO Informational Webinar Registration: Webinar Registration - Zoom HERO Clinical Trial for ARD-101 Now Enrolling Open-Label Extension (OLE) - Prader-Willi Syndrome Association | USA 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 

We are beginning a new 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 Elaine Towle, PWSA | USA Advocacy Specialist and mom to Jim (39, living with PWS), is with Rockie Penta. Rockie is the younger sibling of Victor Penta, a man well-known in the PWS community. Victor is on PWSA | USA's Adults with PWS Advisory Board and has traveled to DC to advocate for the PWS community.  Rockie shares how she speaks up for Victor when needed, sharing time with her parents to avoid burn out, how she navigated PWS growing up and what it looks like now to have him as a roommate and live-in uncle to her children. Spoiler alert, it seems to be going well! 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!

The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Gala Live Auction PWSA | USA's 50th Anniversary: Journey of Hope Gala AUCTION 50th-Gala-How-to-Bid-on-the-Silent-Auction.pdf PWSA Memory 1982_Vol-VIII-N5-Sept-Oct-1982.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSA | USA's 50th Anniversary: Journey of Hope Gala - Campaign Fundraisers 2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | USA Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign Answers for Audrey - Campaign Prader-Silly: A Night of Rare Laughs - Prader-Willi Syndrome Association | USA PWSA Fundraising Pages - Campaign Spotlight on Hope Rising Star in the PWS Community and Beyond - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy 2024-Rare-Roadmap_Rare-Research.pdf Global PWS Registry - Prader-Willi Syndrome Association | USA TREND Community - Prader-Willi Syndrome Association | USA Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA Family Support Adults with PWS: Living a Happy, Healthy Life - Prader-Willi Syndrome Association | USA C15 Foundation – Where Unlimited Potential Can Grow and Thrive Affecting Sleep with PWS - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Parent perceptions of genetic diagnosis in the inpatient setting in the neonatal intensive care unit (NICU), pediatric intensive care unit (PICU), and cardiac care unit (CCU) Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA Seattle, Washington Seattle Children's Hospital Contact: Isabella Niu, MD / Stephanie Purdy Phone: (206) 987-2640 Email: [email protected] www.heroforpws.com Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Request for Prader-Willi Syndrome Research Grant Applications Announcements/Resource Spotlight NICU-Booklet-Rebranded-2022.pdf Intro Music: https://www.bensound.com/  License certificate #2242442 

Direct Support Professionals are a critical aspect to the lives of our loved ones living with Prader-Willi syndrome. They provide more than day-to-day supervision, they ensure dignity, safety, independence, and opportunity for those they support. From carefully managing food security, to navigating challenging behaviors, to offering encouragement and joy in daily activities, DSPs make an extraordinary difference every single day. This week our CEO, Stacy Ward, sat down with three DSPs from the community to discuss what it is like working with individuals with PWS, how these individuals affect their lives, advice they have for DSPs coming into the community, and more. DSP Week comes every September, but we encourage our families to celebrate and appreciate their DSPs throughout the year. Thank you, DSPs!  Read more about Direct Support Professionals Week at In Recognition of Direct Support Professionals - Prader-Willi Syndrome Association | USA Learn more about Prader-Willi syndrome at www.pwsausa.org   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 Direct Support Professionals Week In Recognition of Direct Support Professionals - Prader-Willi Syndrome Association | USA PWSA Memory The Evolution of PWSA | USA’s Logo: A Journey of Hope and Transformation - Prader-Willi Syndrome Association | USA Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign Hotel Options: Where Can We Take You? | Endless Experiences & Top Locations | Marriott Bonvoy Journey of Hope Gala Honoree Spotlight: Dr. Moris Angulo, MD - Prader-Willi Syndrome Association | USA Journey of Hope Gala Honoree Spotlight: Janalee Heinemann - Prader-Willi Syndrome Association | USA Fundraisers Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Calling Minnesota PWS Families - Prader-Willi Syndrome Association | USA Calling Montana PWS Families - Prader-Willi Syndrome Association | USA Calling Alaska PWS Families - Prader-Willi Syndrome Association | USA Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA Family Support Grandparent Perspectives - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Glucose Monitoring - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research VYKAT XR FAQ for Parents Social Skills in Children with Prader-Willi Syndrome: A Survey of Caregivers | QuestionPro Survey [email protected] Harmony Biosciences TEMPO Trial Webinar Recording: Harmony Biosciences TEMPO PWS Study Webinar Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA Gainesville, Florida UF Shands Childrens Hospital Contact: Jennifer Miller, MD Phone: (352) 294-8229 Email: [email protected] www.heroforpws.com Recursos in Espanol: "Hoja de información del estudio clínico HERO" "El ensayo HERO"  una folleto "Estudio HERO"   Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Request for Prader-Willi Syndrome Research Grant Applications Announcements/Resource Spotlight Sleep Summit - Prader-Willi Syndrome Association | USA  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. Intro Music: https://www.bensound.com/  License certificate #2242442 

PWS United podcast just turned 1! We decided to celebrate with a look back at our top 10 episodes from this past year. From nutrition advice to sibling support, adults with PWS and advocacy work, the BIPOC community and Nurse Lynn submissions, Carrie and Anne share some clips to celebrate this growing library of information and support and inspire new listeners to take advantage of this incredible resource for the PWS community. Share this podcast with a friend or family member to help spread PWS awareness. Submit your podcast topic idea to [email protected] or [email protected]  Are you a single parent and caregiver willing to talk with others on the podcast about your experiences? Please send an email to one of the above emails.  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.  Intro Music: https://www.bensound.com/  License certificate #2242442 

How does the perseverance of a community and the dedication of a pharmaceutical company lead to an FDA-approved treatment?    On this episode of PWS United, Anish Bhatnagar, CEO of Soleno Therapeutics, and Kristen Yen, Senior Vice President of Global Clinical Operations, met with Dorothea Lantz, PWSA | USA’s Director of Community Engagement, to look back on their path to FDA approval for VYKAT XR. VYKAT XR is the first-ever FDA-approved treatment for hyperphagia in individuals with Prader-Willi syndrome 4 years of age and older. Anish, Kristen, and Dorothea discuss the unique obstacles they faced along the way to FDA approval and how the company and our PWS community overcame those hurdles. They also discuss the importance of advocacy in obtaining FDA-approved treatments, the experience of finally receiving approval after a long journey, and how Soleno is ensuring access and affordability to VYKAT XR, while also helping families educate and engage with their medical professionals.    What are Anish and Kristen’s messages of hope for the PWS community? Listen to this episode of PWS United to find out.    Links:   https://www.vykatxr.com/  

August is National Make-A-Will Month, and in this special bonus episode of PWS United, we’re shining a light on the importance of planning ahead - both for our families and for the future of PWSA | USA. This milestone year marks PWSA’s 50th anniversary, offering a meaningful opportunity to reflect on the legacy we want to leave for the Prader-Willi syndrome community. Host Carrie Ilijevich is joined by Melanie Zalman, PWSA’s Director of Development and mom to Josie, and Tim Hearn, a member of PWSA’s Board of Directors and dad to David. Together, they talk about the power of planned giving and why sustainability matters for an organization that families rely on for support, guidance, and advocacy. For caregivers, planning ahead brings peace of mind, knowing that loved ones will have the support and security they need throughout their lives. A bequest through your will or trust is a deeply meaningful way to make a lasting impact, ensuring that PWSA can continue its vital programs and services today, tomorrow, and for generations to come. As we look back on five decades of progress and ahead to a hopeful future, we invite you to learn more about legacy giving and consider joining the families who’ve already made this commitment to sustaining PWSA’s mission. Important links: PWSA | USA 50th Journey of Hope Gala PWSA | USA's Make and Impact Website PWSA | USA's Planned Giving Webpage For questions, email [email protected].   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 Planned Giving Your PWS Story Matters—And the Legacy You Leave Can Echo Far into the Future - Prader-Willi Syndrome Association | USA Planned Giving | PWSA USA PWSA Memory Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign Journey of Hope Gala Honoree Spotlight: Dr. Dan Driscoll, MD, PhD - Prader-Willi Syndrome Association | USA Journey of Hope Gala Honoree Spotlight: Dr. Suzanne Cassidy, MD - Prader-Willi Syndrome Association | USA Aaron Weber Stand-Up: Having a Newborn, Urgent Care | The Tonight Show Starring Jimmy Fallon Fundraisers Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Michigan PWS Families - Your Voices are Needed! - Prader-Willi Syndrome Association | USA Federal Budget Proposals Could Undermine Critical Supports for Students with Prader-Willi Syndrome - Prader-Willi Syndrome Association | USA PWS Advocates Participate in Rare Across America Congressional Meetings - Prader-Willi Syndrome Association | USA Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA Family Support The Importance of Caring for your Relationship - Prader-Willi Syndrome Association | USA Empowering PWS Families in IEP Meetings – Registration for Parent Training Ask Nurse Lynn: Bowel Blockage, Edema, and Hospital Stay - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Harmony Biosciences TEMPO Trial Webinar: Webinar Registration - Zoom Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA Minneapolis, Minnesota University of Minnesota Masonic Childrens Hospital Contact: Bradley Miller, MD Phone: (612) 624-5409 Email: [email protected] www.heroforpws.com Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Request for Prader-Willi Syndrome Research Grant Applications Announcements/Resource Spotlight School Success Summit - Prader-Willi Syndrome Association | USA   Intro Music: https://www.bensound.com/  License certificate #2242442 

On today’s episode, we welcome Destiny Pacha, Ed.D., the president of EmpowerED Solutions, an organization dedicated to providing educational consulting, IEP advocacy, and support for families and professionals navigating the complex needs of children with Prader-Willi syndrome (PWS) and other genetic disorders in school settings.   Dr. Pacha was a recent speaker at our United in Hope Conference and graciously offered to extend her discussion time with caregivers. She created a form for people to submit questions and then came onto the podcast to share those responses with our community. Topics included why or why not to disclose a PWS diagnosis, service requirements in relation to public vs private schools, the differences between modifications and accommodations in an IEP, special diplomas, how to know if an IEP is being implemented, the differences between language therapy and speech therapy, and more. This discussion is a wealth of information for anyone with a child with PWS in school. Listen to this episode to learn more about IEP and school support, along with an upcoming training for parents from Dr. Pacha, “Empowering PWS Families in IEP Meetings.”   LINKS Empowering PWS Families in IEP Meetings training registration: https://docs.google.com/forms/d/e/1FAIpQLSdv4Y73t_n-xjOr2QHH5J4pcvyaqGqaKB2dTqORemXzPnHZCA/viewform   Dr. Pacha’s website: https://www.empoweredsolutions.org/ Instagram: https://www.instagram.com/_empowered_solutions/ Facebook: https://www.facebook.com/empowerededucationsolutions   Sign up for our Pulse Newsletter and stay informed at: https://www.pwsausa.org/join-newsletter/ PWSA | USA Instagram: https://www.instagram.com/pwsausa/ PWSA | USA Facebook: https://www.facebook.com/PWSAUSA   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  Make-A-Will Month  Your PWS Story Matters—And the Legacy You Leave Can Echo Far into the Future - Prader-Willi Syndrome Association | USA  Planned Giving | PWSA USA  PWSA Memory  PWSA Memory: PWSA Conference Held with Prader-Willi California Foundation in 1999 - Prader-Willi Syndrome Association | USA  Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA  Events   PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign  Fundraisers  2nd Annual Dance Silly for Prader-Willi - Prader-Willi Syndrome Association | USA  Contact email: [email protected] 16th Annual Hunter Lens Golf Tournament - Prader-Willi Syndrome Association | USA PWSA Fundraising Pages - Campaign  Spotlight on Hope  Volunteer Spotlight: Melissa Rivas - Spreading Joy, Creativity, and Hope - Prader-Willi Syndrome Association | USA  Share Your Story - Prader-Willi Syndrome Association | USA  Advocacy  Exciting News! PWS Included in FY26 Department of Defense Appropriations Bill for Medical Research Medicaid-Fact-Sheet-1.pdf  Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA  Family Support  Understanding Gastric Motility and Gastroparesis in PWS - Prader-Willi Syndrome Association | USA  Building Our Social Skills (BOSS) Program Begins Again - Prader-Willi Syndrome Association | USA   Ask Nurse Lynn: Leptin and Hyperphagia Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA   Research  Harmony Biosciences TEMPO Trial Webinar: Webinar Registration - Zoom  Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA  www.heroforpws.com  Announcements/Resource Spotlight  Qualifying for Social Security Disability with PWS    Intro Music: https://www.bensound.com/; License certificate #2242442 

On this week’s episode of PWS United, we celebrate the 35th Anniversary of the signing of the Americans with Disabilities Act (ADA). The ADA has been monumental in protecting individuals with disabilities from anti-discrimination legislation and ensuring the legal rights of individuals with disabilities to live, work, and receive services in our society. In our discussion of the ADA, we dip briefly into the history of the modern disability rights movement that led up to the signing of the ADA, from the League for the Physically Handicapped in 1936, to Judy Heumann and the 20 day protest in 1977 that led to the late enactment of Section 504 of the Rehabilitation Act of 1973, to the inspiring Capital Crawl of 1990 just months before President Bush signed the ADA. We invited Dorothea Lantz, PWSA’s Director of Community Engagement and mom to Hunter (8, living with PWS) on to the podcast to help us better understand how HR1 may affect Medicaid, the importance of getting involved in advocacy on a state level, and to encourage our community to join in our latest advocacy efforts. Share your Medicaid story: Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA Advocacy email: [email protected] Medicaid-Fact-Sheet-1.pdf PWSA \ USA’s Advocacy webpage: Advocacy & Awareness - Prader-Willi Syndrome Association | USA Introduction to the Americans with Disabilities Act | ADA.gov 2024 PWSA | USA D.C. Fly-In Documentary - YouTube The Road to the Americans with Disabilities Act (ADA) - Prader-Willi Syndrome Association | USA League of the Physically Handicapped (U.S. National Park Service) Judy Heumann (U.S. National Park Service) When the 'Capitol Crawl' Dramatized the Need for Americans with Disabilities Act | HISTORY   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 50th Anniversary PWSA Memory: Volume33-Number4.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign 2025 United in Hope International PWS Conference Recap-General 2025 United in Hope International PWS Conference Video Fundraisers No Gimmes for Jimmy - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope Volunteer Spotlight: Pillar of Strength, Support, and Hope - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy PWSA | USA Helps Usher in New Era of Rare Disease Research with Launch of Florida’s Sunshine Genetics Act - Prader-Willi Syndrome Association | USA Family Support Building Our Social Skills (BOSS) Program Begins Again - Prader-Willi Syndrome Association | USA Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Ocular Issues and Eye Patching - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Study Invitation email: [email protected] Recognizing and Addressing Hyperphagia Early in Prader-Willi Syndrome: Strategies and Insights for Pediatric Endocrinologists and Their Care Team Peer-to-Peer Challenge: Interactive Case Studies in Prader–Willi Syndrome Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA www.heroforpws.com Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight Prader-Willi Syndrome Glossary - PWSA | USA   Intro Music: https://www.bensound.com/; License certificate #2242442 

This episode is a recording from the 2025 United in Hope International PWS conference in Phoenix, AZ. "Endocrine Issues in Teens and Adults" was presented by Dr. Diane Stafford. In this session, Dr. Stafford discusses the issues of growth and pubertal development through the pre-teen and teen years in those with PWS, including the effects of growth hormone therapy and sex steroids. She also discusses the indications for the use of growth hormone therapy in those who have completed their growth, including risks and possible benefits and the indications for ongoing sex steroid therapy in adults with PWS. In this discussion you can learn more about growth hormone monitoring and deficiency, delayed or absent puberty, adrenarche vs puberty, and more.  Visit our website at www.pwsausa.org    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 United in Hope Conference United in Hope—and Action: Reflections from the International Prader-Willi Syndrome Conference 2025 United in Hope International PWS Conference - YouTube PWSA | USA 50th Birthday Party Drone Show Submit conference testimonials to [email protected] or [email protected] 50th Anniversary PWSA Memory: 1975-_-Vol-I-N1-July-1975.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign Fundraisers Hunter Lens Golf Tournament - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope Share Your Story - Prader-Willi Syndrome Association | USA Podcast Questions for Dr. Pacha Advocacy [email protected] Family Support Conference Recap from a Grateful Mom and a Happy Daughter - Prader-Willi Syndrome Association | USA C15 Foundation – Where Unlimited Potential Can Grow and Thrive Pacific Northwest Map: PWSA Link: Your Guide for Prader-Willi Syndrome Support Ask Nurse Lynn: Aging in PWS and Life Spans - 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 [email protected] Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight To-Law-Enforcement-Personnel-Regarding-Adults-with-PWS.pdf   Intro Music: https://www.bensound.com/; License certificate #2242442 

This episode is a recording from the 2025 United in Hope International PWS conference in Phoenix, AZ. "Nutrition Recommendations for Children and Families with PWS" session was presented by Michael Tan, MS, RD, LDN, CDCES, registered dietitian at the University of Florida. This session is an overview of traditional nutrition recommendations, current recommendations and guidance, and how everyone in the family plays a role.  Nutrition Slides from Michael Tan's session: https://www.pwsausa.org/wp-content/uploads/2025/07/PDF-Nutrition-Slides.pdf To share your conference testimonial on the PWS United podcast, please email [email protected]   Intro Music: https://www.bensound.com/; License certificate #2242442   

This is the next episode in our Pioneers in PWS series, a podcast series from PWS United celebrating PWSA | USA's 50th Anniversary! Before there were conferences, support groups, or even a central source of information on Prader-Willi syndrome, there were pioneers. Parents, professionals, and advocates who built the foundation of the PWS community-one connection, one breakthrough, one act of determination at a time. In honor of PWSA | USA's 50th anniversary, we're diving into their stories. Pioneers in PWS was originally a PWSA | USA blog series produced in 2021 by our dedicated volunteers. Throughout 2025, we'll look back on these articles to explore where we've been, how far we've come, and recognize the pioneers who made it possible.  In this episode, we look back at the foundation of our parent mentoring program, how it has evolved over the years, and the incredible women who have passed the torch of support. We hear a brief testimonial from two current parent mentors about some of their favorite experiences of being a mentor. This episode closes out with an interview with the current director of the parent mentoring program, Kristi Rickenbach. She shares with us how she got involved, what she loves about this work, and ultimately, what her goal is as a parent mentor.  You can read the original Pioneers in PWS article at Pioneers in PWS - The Parent Mentoring Program - Prader-Willi Syndrome Association | USA As a reminder, that there will be no new episode coming out next Tuesday. We will be at the International PWS Conference in Phoenix, AZ. Our next episode of PWS United will be a LIVESTREAM from a conference session on Saturday, June 28. Learn more about the session and how to join the livestream at How To Join a PWS United Livestream on Podbean - Prader-Willi Syndrome Association | USA   Intro Music: https://www.bensound.com/; License certificate #2242442 

The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Scoliosis Awareness - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference How-to-Download-the-2025-United-in-Hope-PWS-Conference-Mobile-App.pdf 2025 United in Hope Welcome Packet 2025Family-Agenda-2.pdf 2025ClinicalScientific-Agenda.pdf 2025ProfessionalProviders-Agenda.pdf 2025Adults-with-PWS-Agenda.pdf 50th Anniversary PWSA Memory: 1990_Vol-XVI-N1-Jan-Feb-1990.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events Prader Silly: A Night of Rare Laughs - Campaign Fundraisers Hunter Lens Golf Tournament - Campaign Hummus, Tahini, and PWS Awareness - Prader-Willi Syndrome Association | USA United We Brunch - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope Spotlight on Hope: Ada Thrives and Shines - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA Family Support Adults with PWS Advisory Board Spotlight: Abbott Philson - Prader-Willi Syndrome Association | USA Family Resource Program - Parents/Caregiver Focus Groups Family Resource Program - Sibling Focus Groups Recruitment – SibTime II -English - Influents Innovations Ask Nurse Lynn: Osteoporosis, Calcium, Vitamin D - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Get to Know Aardvark Therapeutics Phase 3 HERO PWS Study Home | Hero Trial Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA Request for Prader-Willi Syndrome Research Grant Applications - Prader-Willi Syndrome Association | USA Announcements/Resource Spotlight Voice of the Patient Report: VOP-Report-4.30_.pdf PWS Externally-Led Patient-Focused Drug Development Meeting   Intro Music: https://www.bensound.com/; License certificate #2242442 

On June 24-28 families and providers in the PWS community from around the world will be gathering in Phoenix, AZ for the 2025 United in Hope International PWS Conference. This is the first ever joint conference between PWSA | USA, FPWR and IPWSO, which symbolizes a historic milestone in the PWS community This groundbreaking event will shape the future of PWS research and care. In this episode, we have a conversation between the three organization heads, Susan Hedstrom, Marguerite Hughes, and of course, our own Stacy Ward. They spoke about what this conference collaboration means for the PWS community and the families we support, and how conference is a place to find community, explore the experience of rarity, and share commonality amongst people with who you may have thought were worlds apart. With a combined 100 years of dedication and work in the PWS community, this conference collaboration is a momentous event for the PWS community. Susan Hedstrom has been the Executive Director of the Foundation for Prader-Willi Research (FPWR) since 2013. Her commitment to this role was deeply rooted in a personal journey that began when her eldest son was diagnosed with Prader-Willi syndrome. Faced with the challenges posed by this rare condition, Susan made a conscious decision not to accept Prader-Willi syndrome as it had been traditionally defined. Instead, she chose to collaborate with a remarkable team of proactive and tireless individuals within FPWR to find treatments and ultimately a cure for Prader-Willi syndrome.   Marguerite Hughes was IPWSO’s CEO between 2019 and 2025, prior to which she served as Vice President (2016 to 2019) and Secretary (2013-2016). She has recently stepped aside however; she has kindly agreed to continue as a volunteer in an advisory capacity. Marguerite is the parent of a 20-year-old son who has PWS. She is based in Ireland. Stacy Ward, CEO of PWSA | USA, is a longtime leader in the PWS community with a background rich in non-profit, behavioral health, education advocacy and has held multiple successful leadership roles. With 30 years of experience working with individuals with ID/DD and 20 years working with individuals diagnosed with PWS, Stacy brings a variety of skills to the role of CEO of PWSA | USA. Prior to her appointment as CEO with PWSA | USA, Stacy was the Director of Family Support. Thank you to the three of them for briefly stepping aside from a busy conference planning schedule to talk about this incredible upcoming event. Learn more about this upcoming conference at Home - 2025 United in Hope PWS Conference   Intro Music: https://www.bensound.com/; License certificate #2242442