PWS United

PWSA | USA
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Welcome to PWS United, a podcast for the Prader-Willi Syndrome community, brought to you by PWSA | USA. This podcast gives the latest news in research, advocacy, and family support by bringing together staff, volunteers, PWS treatment specialists, biotech and pharmaceutical representatives, caregivers, family members, and individuals with PWS. Our goal is to connect education, awareness, and resources with those living with PWS and their supporters. Join us in our mission to enhance the quality of life and empower those affected by Prader-Willi syndrome.

  1. -5 DIAS

    Ep93 Pulse 147: PWS Awareness Day, D.C. Fly-In Recap, Voices on VYKAT 5

    The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400   Pulse Header  The Importance of PWS Awareness Day - PWSA | USA Blog Resource Spotlight  Share Your Spotlight on PWS PWS Awareness Month  Hummus & Watermelon United We Brunch Event - May 31, 2026 | Omaha, NE PWS Awareness Month Hub Events | Fundraisers  View All Upcoming PWS Community Events Soleno Therapeutics PWS Community Day in New Jersey United in Action - PWS Awareness Month Campaign Podcast  Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues Advocacy  A full recap of PWSA | USA's 2026 D.C. Fly-In is coming soon! Colors of Hope Webinar - Advocating as a Person of Color in the Rare Disease Space (May 28 | 8 PM ET) RSVP to: bipocpws@gmail.com Advocacy in New Hampshire: RDAC Appointment of Melanie Zalman, Awareness Day Proclamation - PWSA | USA Blog Calling Kansas PWS Families - PWSA | USA Blog Family Support  PWS Roadshow Connects Families in Bellingham for Life-Changing Outreach Event - PWSA | USA Blog More PWS Roadshow Events Ask Nurse Lynn: Recurring Urinary Tract Infections (UTI) - PWSA | USA Blog Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA   Research  Aardvark Therapeutics Plans to Unblind HERO and OLE Data to Inform Path Forward Following FDA Clinical Hold Free CME! The Missing Piece in the Prader-Willi Puzzle: Optimizing Transitions of Care and Patient Quality of Life PRETEND Play Intervention Study for Ages 3-7: Eligibility Form For questions, email: neurodevelopmen​tresearchlab@gm​ail.com PWS Clinician Information Collection Form PWSA | USA Announcements 2027 United in Hope National PWS Convention Scholarship Applications (Due by June 1, 2026)   Intro Music: https://www.bensound.com/  License certificate #2242442   Music: www.purple-planet.com  Disclaimer for show notes:   This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.

    48 min

  2. 12/05

    Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues

    For this episode we brought in Lynn Garrick, PWSA | USA's Medical and Research Coordinator, mom to John (living with PWS, and the woman behind Ask Nurse Lynn to talk about behavior and psychiatric issues. We learn some important behavioral tips, the importance of consistency, the signs of when it might be time to intervene with medication, how disordered sleep affects behavior, and more.  Our Ask Nurse Lynn library is growing by the week! Please take a moment to look through those articles at Ask Nurse Lynn Archives - Prader-Willi Syndrome Association | USA If you have a non-emergency medical question and would like a response from Lynn, please visit Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Intro Music: https://www.bensound.com/  License certificate #2242442  Music: www.purple-planet.com

    49 min

  3. 5/05

    Ep91 PWS Awareness Month is Here: How to Get Involved

    Another PWS Awareness Month (May 1-31) has arrived and we're excited to continue spreading awareness, information, and support for our loved ones with PWS! In this episode, PWSA | USA's Communications, Advocacy, and Development teams share ways to get involved during PWS Awareness Month - from everyday awareness actions to fundraisers, advocacy efforts and the D.C. Fly-In. Throughout May, be sure to join our social media platforms on Facebook and Instagram so you can share our daily PWS facts for this month. Get your PWS gear to rep awareness, create a fundraising page or event, file a Proclamation Day request using our Proclamation Toolkit, speak at your child's school, share resources with their group home, tell a coworker about our PWS United podcast, or take a friend out for coffee to tell them about your loved one. No action is too small! Use the links below to check out all of the awareness month resources on our resource hub webpage or read our detailed blog on the many different actions you can take this month.  No matter how you spread awareness, your work to share the realities of PWS are appreciated. We're here to support you and your loved one with PWS. Happy PWS Awareness Month!   Get in touch with us: communications@pwsausa.org Advocacy@pwsausa.org development@pwsausa.org info@pwsausa.org   Helpful links: PWS Awareness Month Hub PWSA | USA on Facebook PWSA | USA on Instagram United in Action - Click Here to Take Action! 3rd D.C. Fly-In - Click Here to Find our Legislative Ask Documents Find Your Legislator Locator Website Advocacy & Awareness Webpage   PWSA | USA is available for the PWS community 24-hours a day, 365 days a year. If and when you need support, please reach out to us. You can call us at (941) 312-0400 or email info@pwsausa.org. We are here for you every step of the PWS journey.   Intro Music: https://www.bensound.com/  License certificate #2242442   Music: www.purple-planet.com

    52 min

  4. 28/04

    Ep90 Staying Curious: Continuing the Equity Conversation

    Today’s episode features two more members of our new equity committee, Wordna Meskheniten and Dhivya Venkataraman, along with PWSA CEO Stacy Ward, PWSA Board Member and PWS mom, Dini Rao, and Marketing and Communications Coordinator and PWS mom Anne Fricke. Wordna and Dhivya bring thoughtful insight, experience, and an impressive array of education and work experience to this conversation on how people’s identifiers, on top of a diagnosis of Prader-Willi syndrome, may affect their experiences in the school setting and beyond. This episode touches on the ideas of equity journeys, equity as an everyday practice, the dehumanization of specific identities and how privilege plays a role in that. PWS does not recognize barriers of biological sex, race, gender identity, ethnicity, sexual orientation, income level, faith, or where in the world someone is born. It is found in every community. The power we have to enact change, to advocate for better services, to demand treatment options, is in the community that we have and that we create, and that community includes everyone touched by PWS. Sometimes people may fear that they will lose something in the implementation of equity initiatives -- that somehow, by opening the circle, they will be pushed out. But circles can continue to grow. Promoting and supporting equity initiatives does not take away from people, does not exclude people, it opens up the circle and invites more people in. So we invite you into this conversation, ask you to stay curious, and join us as we explore equity and PWS.

    1 h 1 min

  5. 21/04

    Ep89 Pulse 145: PWS Awareness Month, DC Fly-In, Voices on VYKAT 4, Autism Blog

    The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400   Pulse Header  Celebrating Occupational Therapy Month: How OT Builds Confidence, Comfort, and Skills for Life - Prader-Willi Syndrome Association | USA  Occupational Therapy, Parent Perspective - Prader-Willi Syndrome Association | USA  Spotlight on PWS  Diving in to Volunteering - Prader-Willi Syndrome Association | USA  Share Your Story - Prader-Willi Syndrome Association | USA  Resource Spotlight  Treatment Approaches for Prader-Willi Syndrome  PWS Awareness Month  PWS Awareness Month - Prader-Willi Syndrome Association | USA  United in Action - Campaign  Events | Fundraisers  Magnolias & Mimosas - Campaign  PWS Community Day Registration (Miami) Survey  Miami_PWS_Community_Day_Digital_Invite.pdf  PWSA Events  Podcast  Ep88: What is a Rare Pharmacy? How PWS Families Receive Care Through PANTHERx | PWS United  Advocacy  Monday Office Hours for DC Fly-In Attendees: Join from Zoom Workplace app - Zoom  Friday Office Hours for DC Fly-In Attendees: Join from Zoom Workplace app - Zoom  Family Support  Living Between Diagnoses: Hunter’s Journey with Prader-Willi Syndrome and Autism - Prader-Willi Syndrome Association | USA  Ask Nurse Lynn: Cataplexy Evaluation - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA   Research  Soleno Webinar: One Year of VYKAT XR - Celebrating milestones in treating hyperphagia in PWS  TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today  PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA    Intro Music: https://www.bensound.com/  License certificate #2242442   Music: www.purple-planet.com  Disclaimer for show notes:   This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.

    49 min

  6. 14/04

    Ep88: What is a Rare Pharmacy? How PWS Families Receive Care Through PANTHERx

    One year ago, on March 26, 2025, the PWS community reached a landmark milestone with the FDA approval of VYKAT XR - the first-ever treatment for hyperphagia in PWS. But what happens after approval? How do families actually access the therapy? In this episode of PWS United, PWSA | USA CEO Stacy Ward and Director of Development Melanie Zalman sit down with members of the PANTHERx Rare Pharmacy team to answer exactly that. PANTHERx is the distributing pharmacy for VYKAT XR, and their approach goes far beyond simply filling prescriptions. The team walks us through the PANTHERx Rare Care Model, explains the difference between a rare pharmacy and a specialty pharmacy, and shares how they personally get to know each family's unique needs, including guiding them through the insurance appeal process every step of the way. PWSA | USA is grateful for the meaningful relationship we've built with the PANTHERx team and their dedication to our community. We hope this conversation serves as a helpful resource for families who may be navigating the world of rare pharmacy for the first time and leaves you feeling a little more informed and empowered along the way. Episode Resources: PANTHERx Rare Pharmacy Website About VYKAT XR VYKAT XR FAQ for Parents and Caregivers PWSA | USA Blog - Reflections from PWSA | USA's Visit to PANTHERx Rare Pharmacy   Intro Music: https://www.bensound.com/  License certificate #2242442

    42 min

  7. 7/04

    Ep87: Pulse 144: Conference Scholarships, Sibling Blog, VYKAT Approval Anniversary

    The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Pulse Header 2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA Resource Spotlight Understanding Prader Willi Syndrome & Autism Events | Fundraisers PWS Roadshow: Events | PWSA-OR-WA.ORG PWS Community Day Registration (Miami) Survey Miami_PWS_Community_Day_Digital_Invite.pdf PWSA Events Podcast Ep86: Homeschooling, The Ins and Outs of Educational Choice | PWS United Advocacy HUD Changes Eviction Notice Rules for HUD-Assisted Housing - Prader-Willi Syndrome Association | USA Monday Office Hours for DC Fly-In Attendees: Join from Zoom Workplace app - Zoom Friday Office Hours for DC Fly-In Attendees: Join from Zoom Workplace app - Zoom Family Support Growing up with PWS: A Sibling's Story - Prader-Willi Syndrome Association | USA Ask Nurse Lynn: Behavioral Outbursts and Psychiatric Support - Prader-Willi Syndrome Association | USA Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA Research A Message from Soleno Therapeutics: Reflecting on One Year of VYKAT XR - Prader-Willi Syndrome Association | USA Soleno Webinar: One Year of VYKAT XR - Celebrating milestones in treating hyperphagia in PWS Tirzepatide Study: Contact the Endocrine Research Team at EndocrineResearch@seattlechildrens.org or 206-987-2540, or visit Study Details | NCT06901245 | Tirzepatide in PWS, HO and GNSO | ClinicalTrials.gov PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA   Intro Music: https://www.bensound.com/  License certificate #2242442    Disclaimer for show notes:  This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.

    26 min

  8. 31/03

    Ep86: Homeschooling, The Ins and Outs of Educational Choice

    Our guest today, Julie Casey, mom to Ryan (22, living with PWS), shares her knowledge and experience from homeschooling. The intention of this episode is to shed light on the topic and personal experience of homeschooling with PWS. We offer information so that families in our community, of all configurations (and Julie gets into that), can make informed choices about how their children with PWS are educated. We discuss how to decide if homeschooling is the right decision, or something you’d like to try, the different ways to homeschool, how to find credible information, curriculum, and resources, what it looks like to receive services, and building a homeschooling community. This episode is packed full of information, anecdotes, and, perhaps, inspiration to get you started. Links: Researching curriculum: https://cathyduffyreviews.com/ Oak Meadow | K-12 Homeschool Curriculum & Distance Learning   General information: https://www.homeschool.com/ Laws by state: https://www.homeschool.com/articles/state-homeschooling-laws/ Homeschool laws by state: Homeschool Laws By State The Way They Learn - Cynthia Tobias is a quick easy read that helps parents realize how their child learns.

    58 min
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Excerto

Sobre

Welcome to PWS United, a podcast for the Prader-Willi Syndrome community, brought to you by PWSA | USA. This podcast gives the latest news in research, advocacy, and family support by bringing together staff, volunteers, PWS treatment specialists, biotech and pharmaceutical representatives, caregivers, family members, and individuals with PWS. Our goal is to connect education, awareness, and resources with those living with PWS and their supporters. Join us in our mission to enhance the quality of life and empower those affected by Prader-Willi syndrome.

Informação

  • Autoria
    PWSA | USA
  • Anos em atividade
    2024 - 2026
  • Episódios
    94
  • Classificação
    Para todos
  • Copyright
    © Copyright 2024 All rights reserved.
  • Site do programa
    PWS United

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