PWS United

Ep96 Pulse 148: Preparing for Summer, Awareness Month Gratitude, Getting Involved in Research

The latest in PWSA | USA events and PWS news in research, family support, and advocacy.  24 Hour Crisis Line: 941-312-0400 Pulse Header Enjoy Summer with this List of Fun Activities! - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/enjoy-summer-with-this-list-of-fun-activities/] Navigating Summer Celebrations - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/navigating-summer-celebrations/] Staying Safe in the Heat - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/staying-safe-in-the-heat/] Spotlight on PWS Share Your Story - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/get-involved/share-your-story/] Resource Spotlight TREND Connect [https://connect.trend.community/] Events | Fundraisers Dancing Through the Decades - Campaign [https://give.pwsausa.org/event/dancing-through-the-decades/e791879] Donate to Hummus & Watermelon: United We Brunch for PWS [https://give.pwsausa.org/give/790625/#!/donation/checkout] PWSA Events [https://www.pwsausa.org/events/] Podcast Ep95 Garrick Siblings: Importance of Community and Listening | PWS United [https://pwsunited.podbean.com/e/ep95-garrick-siblings-importance-of-community-and-listening/] Advocacy Local Moms Show Support for Prader-Willi Syndrome Awareness Day [https://www.wsmv.com/video/2026/05/15/local-moms-show-support-prader-willi-syndrome-awareness-day/] Finding the Funny [https://citylifestyle.com/articles/finding-the-funny] Prader Silly: A Night of Rare Laughs - Campaign [https://give.pwsausa.org/event/prader-silly-a-night-of-rare-laughs/e758867] D.C. Fly-In 2026 - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/events/dc-fly-in-2026/] Family Support Awareness Month Success: Thank you, PWS Community! - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/awareness-month-success-thank-you-pws-community/] Medical Stories - Prader-Willi Syndrome (PWS): Ayoni's Story [https://www.youtube.com/watch?v=C_zvXlCbw7E&t=39s] Ask Nurse Lynn: NG Tube or G Tube - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/ask-nurse-lynn-ng-tube-or-g-tube/] Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/ask-nurse-lynn/] Research Home - Global Prader-Willi Syndrome Registry [https://pwsregistry.org/] The Missing Piece in the Prader-Willi Puzzle: Optimizing Transitions of Care and Patient Quality of Life [https://www.medscape.org/viewarticle/missing-piece-prader-willi-puzzle-optimizing-transitions-2026a1000b13] PRETEND Program for Preschoolers Eligibility Form [https://redcap.case.edu/surveys/?s=DAJW9NLX7KH99DDH] PWS Clinician Information Collection Form - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/pws-clinician-information-collection-form/] Announcements 2027 PWSA | USA United in Hope National Convention - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/2027-pwsa-usa-united-in-hope-national-convention/]   Intro Music: https://www.bensound.com/ [https://www.bensound.com/]  License certificate #2242442  Music: www.purple-planet.com [https://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 [http://www.vykatxr.com] for information on use and potential side effects.

Ep95 Garrick Siblings: Importance of Community and Listening

We’re excited to share our latest Sibling Advocacy episode on PWS United. In this ongoing series, we talk with siblings about how they show up for their loved ones with PWS, whether at the kitchen table, at school, among friends, in government spaces, or anywhere their sibling may need support.  This episode is hosted by Elaine Towle, PWSA | USA's Advocacy Specialist and mom to James, living with PWS. She spoke with Hannah and Alex Garrick, siblings to John (20, living with PWS). They share a bit about their lives growing up with a sibling with PWS; the neighborhood watch, food security, and how it led them into the careers they have now.  Hannah and Alex are open about the aggression they experienced from their brother and how food security was difficult, but also share the love they feel for John, the lessons they have gained from their experiences with him, and the relief and happiness that he is doing so well in his current situation. They talk about the importance of listening, both siblings to their loved one with PWS and parents to the sibling, community involvement for the individual with PWS, and how their family has approached the conversation of guardianship. Learn more about Prader-Willi syndrome and PWSA | USA at www.pwsausa.org [http://www.pwsausa.org/]   Intro Music: https://www.bensound.com/ [https://www.bensound.com/]  License certificate #2242442

Ep94 Advocacy is Everything: 2026 DC Fly-In Recap

PWS advocates had an incredible experience in Washington, D.C., this past May 4-6. From policy deep dives and meetings with congressional representatives, to cocktail meetups and seeing old friends, it was a busy, but nourishing, few days. The communications team at PWSA | USA spoke with several attendees at the fly-in to hear their thoughts on what they want their representatives to take home from these meetings, moments that stood out to them, and how to describe PWS advocacy with one word.  Resources: 2026-Hill-Day-Ask-Document-RDIH.pdf [https://www.pwsausa.org/wp-content/uploads/2026/04/2026-Hill-Day-Ask-Document-RDIH.pdf] FDA Rare Disease Innovation Hub | FDA [https://www.fda.gov/industry/medical-products-rare-diseases-and-conditions/fda-rare-disease-innovation-hub] 2026-Hill-Day-Ask-Document-Genomic-Answers-for-CHA.pdf [https://www.pwsausa.org/wp-content/uploads/2026/04/2026-Hill-Day-Ask-Document-Genomic-Answers-for-CHA.pdf] 2026-Hill-Day-Ask-Document-KASSA.pdf [https://www.pwsausa.org/wp-content/uploads/2026/04/2026-Hill-Day-Ask-Document-KASSA.pdf] Facebook [https://www.facebook.com/] Voices That Move Policy: Recapping PWSA | USA's 2026 D.C. Fly-In - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/voices-that-move-policy-recapping-pwsa-usas-2026-d-c-fly-in/] Can't Make It to D.C.? Here's How to Advocate From Home During PWSA | USA's 2026 Fly-In - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/cant-make-it-to-d-c-heres-how-to-advocate-from-home-during-pwsa-usas-2026-fly-in/]

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 [https://www.pwsausa.org/the-importance-of-pws-awareness-day/] Resource Spotlight  Share Your Spotlight on PWS [https://www.pwsausa.org/get-involved/share-your-story/] PWS Awareness Month  Hummus & Watermelon United We Brunch Event - May 31, 2026 | Omaha, NE [https://give.pwsausa.org/event/hummus-and-watermelon-united-we-brunch-for-pws/e790625] PWS Awareness Month Hub [https://www.pwsausa.org/pwsawarenessmonth/] Events | Fundraisers  View All Upcoming PWS Community Events [https://www.pwsausa.org/events/] Soleno Therapeutics PWS Community Day in New Jersey [https://www.pwsausa.org/event/soleno-therapeutics-pws-community-day-in-new-jersey/] United in Action - PWS Awareness Month Campaign [https://give.pwsausa.org/campaign/united-in-action/c786581] Podcast  Ep92 Ask Nurse Lynn: Behavior and Psychiatric Issues [https://pwsunited.podbean.com/e/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) [https://www.pwscolorsofhope.org/event-details/advocating-as-person-of-color-in-the-rare-disease-space] RSVP to: bipocpws@gmail.com [bipocpws@gmail.com] Advocacy in New Hampshire: RDAC Appointment of Melanie Zalman, Awareness Day Proclamation - PWSA | USA Blog [https://www.pwsausa.org/advocacy-in-new-hampshire-rdac-appointment-of-melanie-zalman-awareness-day-proclamation/] Calling Kansas PWS Families - PWSA | USA Blog [https://www.pwsausa.org/calling-kansas-pws-families/] Family Support  PWS Roadshow Connects Families in Bellingham for Life-Changing Outreach Event - PWSA | USA Blog [https://www.pwsausa.org/pws-roadshow-connects-families-in-bellingham-for-life-changing-outreach-event/] More PWS Roadshow Events [https://www.pwsa-or-wa.org/events] Ask Nurse Lynn: Recurring Urinary Tract Infections (UTI) - PWSA | USA Blog [https://www.pwsausa.org/ask-nurse-lynn-recurring-urinary-tract-infections-uti/] Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA [https://www.pwsausa.org/ask-nurse-lynn/]   Research  Aardvark Therapeutics Plans to Unblind HERO and OLE Data to Inform Path Forward Following FDA Clinical Hold [https://ir.aardvarktherapeutics.com/news-releases/news-release-details/aardvark-therapeutics-plans-unblind-hero-and-ole-data-inform] Free CME! The Missing Piece in the Prader-Willi Puzzle: Optimizing Transitions of Care and Patient Quality of Life [https://www.medscape.org/viewarticle/missing-piece-prader-willi-puzzle-optimizing-transitions-2026a1000b13] PRETEND Play Intervention Study for Ages 3-7: Eligibility Form [https://redcap.case.edu/surveys/?s=DAJW9NLX7KH99DDH&bbeml=tp-qsi9xXB5y0KqhGk8MXKG2Q.jb5Fg_gFvDUauwA_4knlnTg.rxwUva_BumEmcoFtkeSIZag.lyjRFXS9bKka-bpgOKLM00Q] For questions, email: neurodevelopmen tresearchlab@gm ail.com [neurodevelopmentresearchlab@gmail.com] PWS Clinician Information Collection Form [https://www.pwsausa.org/pws-clinician-information-collection-form/] PWSA | USA Announcements 2027 United in Hope National PWS Convention Scholarship Applications [https://www.pwsausa.org/2027-pwsa-usa-united-in-hope-national-convention/] (Due by June 1, 2026)   Intro Music: https://www.bensound.com/ [https://www.bensound.com/]  License certificate #2242442   Music: www.purple-planet.com [https://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 [http://www.vykatxr.com/] for information on use and potential side effects.

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 [https://www.pwsausa.org/category/ask-nurse-lynn/] 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 [https://www.pwsausa.org/ask-nurse-lynn/] Intro Music: https://www.bensound.com/ [https://www.bensound.com/]  License certificate #2242442  Music: www.purple-planet.com [https://www.purple-planet.com/]