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X-WR-CALDESC:Events for Prader-Willi Syndrome Association | USA
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DTSTART;TZID=America/New_York:20260423T193000
DTEND;TZID=America/New_York:20260423T210000
DTSTAMP:20260422T171444
CREATED:20260403T192255Z
LAST-MODIFIED:20260403T192255Z
UID:66600-1776972600-1776978000@www.pwsausa.org
SUMMARY:Webinar Opportunity: Celebrating One Year With VYKAT XR\, Hosted by Soleno Therapeutics
DESCRIPTION:In honor of VYKAT XR’s one-year anniversary\, PWS community members are invited to register for Soleno’s upcoming webinar. Join to learn about the signs and symptoms of hyperphagia in Prader-Willi syndrome and find out if VYKAT XR may be right for you or your loved one. VYKAT XR is approved for people ages 4 and older with hyperphagia in PWS. The webinar will take place Thursday\, April 23\, 2026\, from 7:30–9:00 pm ET (4:30–6:00 pm PT). \nCLICK HERE TO RESERVE YOUR SPOT \nCLICK HERE TO DOWNLOAD THE FLYER
URL:https://www.pwsausa.org/event/webinar-opportunity-celebrating-one-year-with-vykat-xr-hosted-by-soleno-therapeutics/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260425T130000
DTEND;TZID=America/New_York:20260425T160000
DTSTAMP:20260422T171444
CREATED:20260330T185135Z
LAST-MODIFIED:20260330T185224Z
UID:66402-1777122000-1777132800@www.pwsausa.org
SUMMARY:PWS Community Day in Miami\, FL
DESCRIPTION:PWS Community Day in Miami\, FL\nWhen: April 25\, 2026 | 1:00 – 4:00 PM\nWhere: Miami Children’s Museum (980 MacArthur Cswy\, Miami\, FL 33132) \nCLICK HERE TO REGISTER (Free to attend) \nJoin for a day of connection\, care\, and fun for families in the community. Soleno Therapeutics is committed to supporting the community and advocating for the treatment of hyperphagia associated with PWS. In collaboration with Prader-Willi Syndrome Association | USA and The Foundation for Prader-Willi Research\, we invite you to PWS Community Day—a welcoming space for families like yours to connect\, recharge\, learn\, play\, and create together. \nWhile event activities won’t begin until 1:00 PM\, attendees are welcome to enjoy the museum from 10:00 am–12:45 pm. You will need to check in with event organizers first to receive your wristbands. Food will NOT be provided during the event\, but please feel free to pack a snack or lunch from home. A separate\, secure space will be provided should your child need to eat. \nCheck out the image below for the full event schedule.
URL:https://www.pwsausa.org/event/pws-community-day-in-miami-fl/
LOCATION:Miami Children’s Museum\, 980 MacArthur Cswy\, Miami\, FL\, 33132\, United States
CATEGORIES:Florida
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260425T180000
DTEND;TZID=America/New_York:20260425T210000
DTSTAMP:20260422T171444
CREATED:20260305T140019Z
LAST-MODIFIED:20260312T140221Z
UID:65897-1777140000-1777150800@www.pwsausa.org
SUMMARY:Solidarity & Spice: A Rare Wine Pairing Dinner
DESCRIPTION:Join us for a six-course wine pairing dinner hosted by Anish Bhatnagar & Dini Rao\, to launch the “No More Lasts” PWSA | USA Equity Project. \nWhen: Saturday\, April 25\, 2026 | 6 – 9 PM\nWhere: Rasika West End | Washington\, DC\nLEARN MORE AND PURCHASE TICKETS HERE \nWe’ll take you on an exquisite journey through India’s rich culinary styles from chaat style street bites to tawa tender fish\, tandoor kebabs and a range of dal\, bhartas\, masalas\, homemade breads and festive accompaniments at the renowned DC locale\, Rasika\, where presidents celebrate birthdays and ambassadors dine. Washington Post food critic Tom Sietsema wrote\, “Nobody glorifies the cooking of India like Rasika\,” and “While the restaurant scene has gained from more Indian competitors of late\, no chef has surpassed Vikram Sunderam’s finesse or flavors\,” as he put Rasika on his hall of fame list.  It is no wonder Chef Sunderam was awarded the 2013 James Beard award for best chef in the Mid-Atlantic region. \nThe meal will be enhanced as Wine Curator Dini Rao guides you through this six-course tasting menu with wines chosen from Anish Bhatnagar’s collection to create the pairings of a lifetime. In Dini’s nearly 30 years of hosting wine events including a dinner at Julia Child’s house and a wine tasting for British royalty\, never before has a dinner spoken more to her epicurean heart. \nA vegetarian or dairy free option is available or contact dinivrao@gmail.com to discuss other food restrictions. \nMore About the “No More Lasts” PWSA | USA Equity Project \nPrader-Willi syndrome (PWS)\, it is a rare genetic condition that has no cure. It is also one where early diagnosis\, coordinated care\, and lifelong supports dramatically shape health and quality-of-life outcomes. Yet these benefits are not always realized. Children and adults from marginalized communities experience delayed diagnosis\, reduced access to specialized PWS care\, underrepresentation in research and registries\, and poorer downstream outcomes. \nAt PWSA USA we are creating an Equity Initiative to make sure that research developments are useful to our whole population and that more people can access the tools currently available. We want to make sure there are no more lasts – no more last diagnosed\, no more last treated. This “No More Lasts” initiative aims to close the gap in racial\, ethnic\, religious and other disparities for those affected by Prader-Willi Syndrome by accelerating diagnoses\, access to evidence-based care\, and inclusion in research—so no community is left last. \nCome join us by becoming a founding supporter of this important initiative.
URL:https://www.pwsausa.org/event/solidarity-and-spice/
LOCATION:Rasika West End\, 1190 New Hampshire Avenue Northwest\, Washington\, DC\, DC\, 20037\, United States
CATEGORIES:District of Colombia
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260501
DTEND;VALUE=DATE:20260601
DTSTAMP:20260422T171444
CREATED:20260408T200758Z
LAST-MODIFIED:20260408T200758Z
UID:66740-1777593600-1780271999@www.pwsausa.org
SUMMARY:United In Action - PWS Awareness Month Initiative
DESCRIPTION:Take Action – make an impact from wherever you are. The comfort of home or the steps of the Capitol.  Your action makes a difference.\nAt PWSA | USA\, we believe that raising awareness for Prader-Willi syndrome begins right where we are — with the friends\, family\, neighbors\, and colleagues who make up our everyday lives. \nAs families living with PWS\, we understand the power of community. Building a village of support can feel effortless for some and overwhelming for others — but one thing is certain: none of us should have to navigate this journey alone. \nThis May\, for PWS Awareness Month\, we’re proud to launch United in Action — a nationwide initiative bringing people together to connect\, share\, and strengthen the support our community deserves. One state. One family. One moment at a time. \nUnited in Action is about more than awareness. It’s about fostering hope\, building real connections\, and creating a ripple effect of support that spreads across the country. Together\, we can make sure no family feels invisible and no story goes unheard. \nOur vision is bold: every May\, in every corner of the U.S.\, new groups gathering\, new voices rising\, and a wave of momentum growing stronger with each passing year. \nIt starts here. It starts now. It starts with you.  \nCLICK HERE TO LEARN MORE
URL:https://www.pwsausa.org/event/united-in-action-pws-awareness-month-initiative/
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260504
DTEND;VALUE=DATE:20260507
DTSTAMP:20260422T171444
CREATED:20251106T202005Z
LAST-MODIFIED:20260303T142745Z
UID:62948-1777852800-1778111999@www.pwsausa.org
SUMMARY:2026 D.C. Fly-In
DESCRIPTION:Every two years\, the PWSA | USA D.C. Fly-In brings families and supporters in the Prader-Willi syndrome (PWS) community together to ensure their voices are heard where it matters most – on Capitol Hill. This three-day event was created out of a growing necessity to advocate for the needs of our loved ones living with PWS and raise awareness among our nation’s changemakers. \nBetween May 4-6\, 2026\, our 3rd Biennial D.C. Fly-In will unite advocates\, families\, and rare-disease leaders to meet directly with Members of Congress and federal agencies. Following the success of our 2024 event\, with 139 advocates from 31 states and 131 Congressional meetings\, the 2026 Fly-In will expand in both scale and impact. \nApplications are now available! Find the downloadable application and additional details at: https://www.pwsausa.org/events/dc-fly-in-2026/
URL:https://www.pwsausa.org/event/2026-d-c-fly-in/
LOCATION:Yours Truly DC Hotel\, 1143 New Hampshire Ave NW\, Washington\, DC\, DC\, 20037\, United States
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260516T113000
DTEND;TZID=America/New_York:20260516T113000
DTSTAMP:20260422T171444
CREATED:20260408T201727Z
LAST-MODIFIED:20260408T201727Z
UID:66742-1778931000-1778931000@www.pwsausa.org
SUMMARY:United We Brunch: Magnolias and Mimosas
DESCRIPTION:What: Magnolias and Mimosas\, A Spring Brunch Fundraiser Hosted by Kat Lucero\nWhen: Saturday\, May 16\, 2026 | 11:30 AM\nWhere: The Shoppe (119 Costilla St.\, Colorado Springs\, CO 80903) \nClick Here to Learn More\, Purchase Tickets\, and Donate! \nEach May\, in recognition of Prader-Willi Syndrome (PWS) Awareness Month\, Magnolias & Mimosas brings together an intimate group of 50 guests in Colorado Springs for an elevated brunch experience rooted in connection\, beauty\, and purpose. Guests enjoy mimosas\, meaningful mission moments\, and an elegant silent auction—creating a warm\, engaging atmosphere that encourages generosity while raising both awareness and critical funds for the Prader-Willi Syndrome Association. \nIn its first year\, Magnolias & Mimosas raised nearly $3\,000\, demonstrating the power of a thoughtfully curated\, community-centered event. With the support of sponsors and partners\, our goal is to continue growing this impact each year. Magnolias & Mimosas offers sponsors a unique opportunity to align with a meaningful cause during PWS Awareness Month while supporting an experience that is personal\, inspiring\, and designed to make a lasting difference year after year.
URL:https://www.pwsausa.org/event/united-we-brunch-magnolias-and-mimosas/
LOCATION:The Shoppe\, 119 Costilla St.\, Colorado Springs\, CO\, 80903\, United States
CATEGORIES:Colorado
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260620T063000
DTEND;TZID=America/New_York:20260620T063000
DTSTAMP:20260422T171444
CREATED:20260408T204035Z
LAST-MODIFIED:20260408T204114Z
UID:66746-1781937000-1781937000@www.pwsausa.org
SUMMARY:Counting Blessings in Miles Fundraiser
DESCRIPTION:What: Counting Blessings in Miles – Amy Maust Runs the Charlevoix 1/2 Marathon\nWhen:  June 20\, 2026\nWhere: Charlevoix\, Michigan \nClick Here to Donate to “Counting Blessings in Miles” \nA message from Amy Maust: \n“I’m running for Prader-Willi Syndrome Association USA to ensure that all PWS families have the support\, advocacy\, research\, and resources needed to help individuals with PWS thrive. Working at PWSA | USA\, helps me appreciate my health\, as I see others who are affected (directly or indirectly by PWS). The work we do at PWSA is a blessing for families affected by PWS. I decided to run the Charlevoix Half marathon in order to ‘count my blessings in miles’ as a way to bring awareness and raise money for PWS. Each mile I train\, I will post my “grateful list” and donate. I hope others will join me in helping the lives of those with PWS.” \n 
URL:https://www.pwsausa.org/event/counting-blessings-in-miles-fundraiser/
CATEGORIES:Michigan
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260821
DTEND;VALUE=DATE:20260823
DTSTAMP:20260422T171444
CREATED:20251106T202301Z
LAST-MODIFIED:20260203T162216Z
UID:62952-1787270400-1787443199@www.pwsausa.org
SUMMARY:2026 Residential Providers Conference
DESCRIPTION:Registration is NOW OPEN! Residential Providers are invited to join PWSA | USA for the 2026 Residential Providers Conference – an unforgettable gathering dedicated to enhancing care\, sharing insights\, and strengthening community among residential providers in the PWS space.\n\n\n \n\n\n August 21–22\, 2026\n\n\n The Kimpton Brice Hotel | Savannah\, GA\n\n\n \n\n\nFor the second time\, we’re bringing together residential professionals from across the country to learn from colleagues and field experts\, exchange best practices\, and build collective expertise to improve outcomes for individuals living with Prader-Willi syndrome.\n\n\n \n\n\nThis conference is exclusively for residential providers and offers a unique opportunity to connect\, collaborate\, and grow alongside peers who understand the vital work you do every day.\n\n\n \n\n\nYou can register\, find the link to our room block\, and learn more at https://www.pwsausa.org/residentialprovidersconference/.
URL:https://www.pwsausa.org/event/2026-residential-providers-conference/
LOCATION:Kimpton Brice Hotel\, 601 E Bay St\, Savannah\, GA\, 31401\, United States
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260930T173000
DTEND;TZID=America/New_York:20260930T210000
DTSTAMP:20260422T171444
CREATED:20260301T140013Z
LAST-MODIFIED:20260301T160448Z
UID:65894-1790789400-1790802000@www.pwsausa.org
SUMMARY:2nd Annual Prader Silly: A Night of Rare Laughs
DESCRIPTION:Hey Nashville! It’s time to laugh in rare form.\nWhen: Wednesday\, September 30\, 2026\nWhere: Zanies Comedy Club | Nashville\, TN\nLEARN MORE AND PURCHASE TICKETS HERE \nOn Wednesday\, September 30th\, 2026\, the iconic Zanies Comedy Club will host the 2nd Annual Prader Silly: A Night of Rare Laughs. This is a one-night-only comedy fundraiser benefiting the Prader-Willi Syndrome Association | USA and will be hosted by PWS parents Aaron Weber and Lucy Sinsheimer of Nashville. \nJoin Aaron Weber and a (**TOP SECRET**) celebrity lineup of nationally acclaimed comics for an evening of laughs for a cause! This is more than a comedy show. It’s a night of gathering\, giving\, and gut-busting laughter — featuring a powerhouse lineup of top-tier comedians\, a silent auction packed with unforgettable prizes\, and several surprise guest performers we’re keeping tucked in our back pocket (Shhh…). Whether you come for the laughs\, the love\, or the chance to stand up for a rare cause\, this is your invitation to show up—for PWS families and others on a rare disease journey. \nClick HERE to watch a TV interview on WSMV Channel 4 show “Nashville Today” on PWS Awareness Day (May 15th\, 2025).
URL:https://www.pwsausa.org/event/2nd-annual-prader-silly-a-night-of-rare-laughs/
LOCATION:Zanies Comedy Night Club Nashville\, 2025 8th Ave S\, Nashville\, TN\, 37204\, United States
CATEGORIES:Tennessee
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20261016
DTEND;VALUE=DATE:20261018
DTSTAMP:20260422T171444
CREATED:20251106T202611Z
LAST-MODIFIED:20260223T225202Z
UID:62955-1792108800-1792281599@www.pwsausa.org
SUMMARY:2026 Moms' Retreat
DESCRIPTION:We have reached capacity for the 2026 Moms’ Retreat and moved to a waitlist. If you’d like to join the waitlist\, please click visit https://cvent.me/ZZPORm. For questions\, email afrazier@pwsausa.org.\n\nAbout the 2026 Moms’ Retreat \nEvery day\, moms and female caregivers in the Prader-Willi syndrome (PWS) community give so much of themselves\, often putting their own needs last. This fall\, we’re inviting you to do something just for yourself. \nPWSA | USA’s 2nd Moms’ Retreat will take place October 16–17\, 2026\, at the Grand Hyatt Deer Valley in Park City\, Utah\, and it’s designed specifically for moms and female caregivers who deserve rest\, connection\, and renewal. \nThis intimate weekend will bring together 100 women from across the PWS community for meaningful conversations\, uplifting sessions\, and shared experiences centered on powerful themes like “You Belong Here\,” “Giving Yourself Grace\,” and “You Matter Too.” You’ll leave feeling seen\, supported\, and connected to others who truly understand your journey. \nIf you’ve been waiting for permission to pause\, this is it. Join us for a weekend that creates space for you and friendships that last far beyond it. \nSpots are limited to 100 attendees and will fill quickly. Once capacity is reached\, registration will close and we will move to a waitlist. \n 
URL:https://www.pwsausa.org/event/2026-moms-retreat/
LOCATION:Grand Hyatt Deer Valley Hotel\, 1702 Glencoe Mountain Wy\, Park City\, UT\, 84060\, United States
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20270714
DTEND;VALUE=DATE:20270718
DTSTAMP:20260422T171444
CREATED:20251224T172009Z
LAST-MODIFIED:20251224T172009Z
UID:64110-1815523200-1815868799@www.pwsausa.org
SUMMARY:2027 PWSA | USA United in Hope National Convention
DESCRIPTION:When: July 14 – 17\, 2027 \nWhere: Orlando\, FL | Caribe Royale Orlando \nMore details coming soon!
URL:https://www.pwsausa.org/event/2027-pwsa-usa-united-in-hope-national-convention/
LOCATION:Caribe Royale Orlando\, 8101 World Center Drive\, Orlando\, Florida\, 32821
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