Ep 94 Advocacy is Everything: 2026 DC Fly-In Recap

Ep 94 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/]

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 [communications@pwsausa.org] Advocacy@pwsausa.org [Advocacy@pwsausa.org] development@pwsausa.org [development@pwsausa.org] info@pwsausa.org [info@pwsausa.org]   Helpful links: PWS Awareness Month Hub [https://www.pwsausa.org/pwsawarenessmonth/] PWSA | USA on Facebook [https://www.facebook.com/pwsausa] PWSA | USA on Instagram [https://www.instagram.com/pwsausa/] United in Action - Click Here to Take Action! [https://give.pwsausa.org/campaign/united-in-action/c786581] 3rd D.C. Fly-In - Click Here to Find our Legislative Ask Documents [https://www.pwsausa.org/events/dc-fly-in-2026/] Find Your Legislator Locator Website [https://findmylegislator.com/] Advocacy & Awareness Webpage [https://www.pwsausa.org/what-we-do/advocacy/]   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 [info@pwsausa.org]. We are here for you every step of the PWS journey.   Intro Music: https://www.bensound.com/ [https://www.bensound.com/]  License certificate #2242442   Music: www.purple-planet.com [https://www.purple-planet.com/]

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.