PWS United

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 KKrukowski1@thechicagoschool.edu 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: millejl@peds.ufl.edu 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 pwsunitedpodcast@gmail.com or communications@pwsausa.org  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 development@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 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: mille685@umn.edu 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: mhampton0933@gmail.com 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: advocacy@pwsausa.org 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: harri764@mailbox.sc.edu 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 africke@pwsausa.org or communications@pwsausa.org 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 advocacy@pwsausa.org 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 HarmonyPWS@science37.com 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 africke@pwsausua.org   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 

PWS United hosts Carrie Ilijevich and Anne Fricke sat down with Kristi Rickenbach, PWSA | USA Parent Support Coordinator and frequent guest on the podcast, and the woman behind so much of the intricate and incredible planning, PWSA | USA’s Events Coordinator, Angela Frazier, for a conversation about all things conference. They covered many topics including the mobile app for conference, getting around the grounds and the venue, food availability and meal planning, staying cool in the Arizona heat, PWSA | USA's 50th birthday celebration, and more.  Home - 2025 United in Hope PWS Conference 2025 Pre-Conference Feedback Survey   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 PWS Awareness Month - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference High-Level 2025 Conference Schedule Family Conference Clinical and Scientific Program High-Level 2025 Conference Schedule Professional Providers 50th Anniversary PWSA Memory: 1995_Vol-XX-N1-Feb-1995.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events The Zuzu Secret Novel for Elementary and Middle Grade - Beardies, Prader-Willis Syndrome, Baseball — Miriam Chernick - Author & Educator Prader Silly: A Night of Rare Laughs - Campaign bipocpws@gmail.com Fundraisers Lyra Mills's fundraising page for Prader-Willi Syndrome Association Filling Cups with PWS Awareness - Prader-Willi Syndrome Association | USA United We Brunch - Campaign PWSA Fundraising Pages - Campaign Spotlight on Hope Spotlight on Hope: Lydia and Dalyas Dreamers - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy PWSA Advocates Represent Disability Needs and Rights in DC - Prader-Willi Syndrome Association | USA PWS Awareness Month Proclamation Toolkit advocacy@pwsausa.org etowle@pwsausa.org Family Support Adults with PWS Advisory Board Spotlight: Conor Heybach - Prader-Willi Syndrome Association | USA PWSA | USA Family Support Webinar: Creating Financial Security for a Loved One with PWS Family Resource Program - Parents/Caregiver Focus Groups Family Resource Program - Sibling Focus Groups Ask Nurse Lynn: Genetics and Weight Gain - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research Aardvark’s HERO Clinical Trial Webinar: Webinar Registration - Zoom Home | Hero Trial Dr. Pacha’s Educational Trends Survey: Caregiver Screener | QuestionPro Survey 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 GI-Algorithm-Chart-2022.pdf   Intro Music: https://www.bensound.com/; License certificate #2242442 

PWSA | USA staff members Sarah Kasaby, Melanie Zalman, Charles Conway, Elaine Towle, and Kristi Rickenbach, are parents of loved ones with PWS. On this episode of PWS United, they share their PWS origin stories, how things have changed since the early days of their PWS journey, and their favorite ways to spread PWS awareness. Honesty, wisdom, support, pride in their loved ones, and hope for the future permeate this episode - an inspiring way to celebrate PWS Awareness Month for all of May, focusing on May 15 as PWS Awareness Day! Find ways you can help spread awareness at our  PWS Awareness Month - 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 PWS Awareness Month - Prader-Willi Syndrome Association | USA United in Hope Conference Home - 2025 United in Hope PWS Conference High-Level 2025 Conference Schedule Family Conference High-Level 2025 Conference Schedule Professional Providers 50th Anniversary PWSA Memory: PWSA-Pulse-May-2021.pdf Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA Events Financial Security Webinar: Webinar Registration - Zoom Fundraisers United We Brunch - Campaign The Good, The Bad, The Bubbly CALIFORNIA 5/24/25's fundraising page for Prader-Willi Syndrome Association PWSA Fundraising Pages - Campaign Spotlight on Hope Spotlight on Hope: Mastering Karate with Cameron - Prader-Willi Syndrome Association | USA Share Your Story - Prader-Willi Syndrome Association | USA Advocacy Members Sought for the Drug Utilization Review Board PWS Awareness Month Proclamation Toolkit advocacy@pwsausa.org etowle@pwsausa.org Family Support Adults with PWS Advisory Board Spotlight: Victor Penta - Prader-Willi Syndrome Association | USA Family Resource Program - Parents/Caregiver Focus Groups Family Resource Program - Sibling Focus Groups Post a Message for Mother's Day - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Fevers with PWS - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research VYKAT XR Town Hall Summary - Prader-Willi Syndrome Association | USA Dr. Pacha’s Educational Trends Survey: Caregiver Screener | QuestionPro Survey Embracing Differences | The Journey Behind "It Starts With Hello: Katie’s Story About Prader-Willi Syndrome" - 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 A Letter to Friends and Family - Prader-Willi Syndrome Association | USA   Intro Music: https://www.bensound.com/; License certificate #2242442