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X-WR-CALNAME:Prader-Willi Syndrome Association | USA
X-ORIGINAL-URL:https://www.pwsausa.org
X-WR-CALDESC:Events for Prader-Willi Syndrome Association | USA
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DTSTART;TZID=America/New_York:20260321T170000
DTEND;TZID=America/New_York:20260321T213000
DTSTAMP:20260418T114102
CREATED:20260105T155643Z
LAST-MODIFIED:20260115T145951Z
UID:64326-1774112400-1774128600@www.pwsausa.org
SUMMARY:2026 Clint Hurdle Hot Stove Dinner
DESCRIPTION:Registration is NOW OPEN for the 12th Annual Clint Hurdle Hot Stove Dinner! Join hosts Clint and Karla Hurdle on Saturday\, March 21\, 2026\, on the beautiful grounds of Bradenton Country Club in Bradenton\, Florida – or participate virtually from anywhere – and help make a meaningful difference for those affected by Prader-Willi syndrome. \nThis special evening brings together the PWS community\, friends\, and supporters to raise critical funds for PWSA | USA through inspiring stories\, a silent auction featuring exclusive items and experiences\, a gourmet dinner\, live entertainment\, a raffle\, and the ever-popular Coconut Drop (Golf Ball Drop). \nYour attendance and support fuels PWSA | USA’s vital Family Support services and programs. Together\, we can create a brighter future for individuals and families affected by PWS. \nREGISTER HERE \nDONATE HERE
URL:https://www.pwsausa.org/event/2026-clint-hurdle-hot-stove-dinner/
LOCATION:Bradenton Country Club\, 4646 9th Ave W\, Bradenton\, Florida\, 34209
CATEGORIES:Florida
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260303T200000
DTEND;TZID=America/New_York:20260303T210000
DTSTAMP:20260418T114102
CREATED:20260211T205700Z
LAST-MODIFIED:20260303T142409Z
UID:65463-1772568000-1772571600@www.pwsausa.org
SUMMARY:HERO Clinical Trial Community Conversation
DESCRIPTION:When: Tuesday\, March 3\, 2026 @ 5 PM PT | 8 PM ETWhere: Online via ZOOM \nClick Here to Register \n\nThe PWS community is invited to join a virtual community conversation regarding the HERO clinical trial and recent announcement from Aardvark Therapeutics about the voluntary pause. PWSA | USA and The Foundation for Prader-Willi Research are co-hosting this webinar on Tuesday\, March 3 (tomorrow) at 8:00 PM ET / 5:00 PM PT. We will be joined by Aardvark Therapeutics CEO Tien Lee and Chief Medical Officer Manasi Jaiman\, who will speak about the announcement and answer questions from the community.\n\n\nPlease note: This webinar will not be recorded.
URL:https://www.pwsausa.org/event/hero-clinical-trial-community-conversation/
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2026/02/Aardvark-Webinar-Web-graphic-5.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260228T130000
DTEND;TZID=America/New_York:20260228T160000
DTSTAMP:20260418T114102
CREATED:20260218T202637Z
LAST-MODIFIED:20260218T202637Z
UID:65659-1772283600-1772294400@www.pwsausa.org
SUMMARY:PWS Community Day in North Carolina
DESCRIPTION:Families in the PWS community are invited to attend a PWS Community Day on Rare Disease Day (Saturday\, February 28th) in Durham\, NC! This event\, hosted by Soleno Therapeutics in collaboration with PWSA | USA and FPWR\, will take place at The Museum of Life and Science (433 W. Murray Avenue\, Durham\, NC 27704) from 1:00 – 4:00 PM EST. Attendees will enjoy a day of connection\, care\, and fun. Food will NOT be provided during this event\, but please feel free to pack a snack or lunch from home. A separate\, secure space to dine will be available. \nREGISTER TO ATTEND THE PWS COMMUNITY DAY \nWhat to Expect\n1:00–1:15 pm Welcome & Open Remarks (Mercury Room) \n1:15–1:30 pm Caregiver Networking: A supportive space to connect with other caregivers\, talk\, learn from each other\, and engage with the PWS community in your area.\nFun Zone*: Solar System Adventures! Engaging supervised activities for individuals with PWS and their siblings. \n1:30–2:15 pm Caregiver Session: Self-care activity and discussion. A session focused on the importance of self-care\, which will provide conversation and tools to help you pause\, recharge\, and apply simple self-care tips in your daily life.\nFun Zone*: Solar System Adventures continues! Engaging supervised activities for individuals with PWS and their siblings. \n2:15–2:45 pm Break: Opportunity for families to check in. \n2:45–3:30 pm Caregiver Session: Hear from a doctor and caregiver and learn more about a treatment option.\nFun Zone*: Solar System Adventures continues! Engaging supervised activities for individuals with PWS and their siblings. \n3:30–4:00 pm Closing: Gather for final remarks and goodbyes (Mercury Room) \n* The Fun Zone will be a dedicated space with arts\, crafts\, and activities for those living with PWS and their siblings. It will include movement\, games\, and laughter with peers. 2:1 supervision will be provided by Corporate Kids Events’ qualified and trained staff.
URL:https://www.pwsausa.org/event/pws-community-day-in-north-carolina/
LOCATION:The Museum of Life and Science\, 433 W. Murray Avenue\, Durham\, NC\, 27704\, United States
CATEGORIES:North Carolina
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260418T114102
CREATED:20260203T164946Z
LAST-MODIFIED:20260203T165301Z
UID:65216-1772236800-1772323199@www.pwsausa.org
SUMMARY:Rare Disease Day 2026
DESCRIPTION:Rare Disease Day is a global movement to raise awareness and advocate for the more than 300 million people worldwide living with a rare disease. Held annually on the last day of February\, this day unites individuals\, families\, organizations\, and communities to shine a light on the challenges of rare diseases and the urgent need for research\, support\, and policy change. \nCheck out PWSA | USA’s Rare Disease Day webpage (below) to find ways you can raise awareness in your community\, graphics to share on social media and caption ideas\, Rare Disease Day FAQs\, and so much more!
URL:https://www.pwsausa.org/event/rare-disease-day-2026/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260129T193000
DTEND;TZID=America/New_York:20260129T210000
DTSTAMP:20260418T114102
CREATED:20260115T150607Z
LAST-MODIFIED:20260115T150607Z
UID:64731-1769715000-1769720400@www.pwsausa.org
SUMMARY:VYKAT XR Webinar from Soleno Therapeutics
DESCRIPTION:When: Thursday\, January 29\n@ 7:30 – 9pm ET | 4:30 – 6pm PT \nREGISTER HERE \nIn 2026\, Soleno Therapeutics\, the makers of VYKAT XR will be hosting a series of caregiver webinars. Each webinar will have a mini-theme related to important moments in the PWS community. On January 29\, the webinar will review the signs and symptoms of hyperphagia in Prader-Willi syndrome\, what VYKAT XR may offer as a treatment option for patients 4 years and older\, and how to get started. Speakers include Jorge Mejia-Corletto\, MD (Pediatric Endocrinologist\, NYU Langone Health)\, Paola Mora\, MS\, RD\, CDCES (PACE\, Soleno Therapeutics)\, Brennen Fields (Sr. Director\, Patient Access Solutions\, Soleno Therapeutics)\, Brian (Father and caregiver to Paxton)\, and Elisa Herrera (National Director\, Patient and Community Educators (PACE) Director\, Residential Stakeholders\, Soleno Therapeutics)\, as moderator.
URL:https://www.pwsausa.org/event/vykat-xr-webinar-from-soleno-therapeutics/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260129T120000
DTEND;TZID=America/New_York:20260129T130000
DTSTAMP:20260418T114102
CREATED:20260115T151020Z
LAST-MODIFIED:20260115T151020Z
UID:64734-1769688000-1769691600@www.pwsausa.org
SUMMARY:Shedding Light on Sleep Disorders: TREND Webinar
DESCRIPTION:When: Thursday\, January 29\, 2026\n@ 12 – 1pm ET\nREGISTER HERE\n\n\nSleep challenges are a real — and often misunderstood — part of life with Prader-Willi syndrome.\n\n\nJoin TREND Community for “Shedding Light on Sleep Disorders in Prader-Willi Syndrome\,” a webinar centered on caregiver experiences and clinical insight\, with a focus on listening\, learning\, and understanding the real-world impact of sleep issues in PWS.\n\n\n\n\n\nThis is not a traditional lecture. It’s an honest conversation about what families see\, feel\, and wish they had known sooner — paired with guidance from clinicians who help translate lived experience into care.
URL:https://www.pwsausa.org/event/shedding-light-on-sleep-disorders-trend-webinar/
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2026/01/615711667_1288229969998625_8093198902112356622_n-jpg.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260127T200000
DTEND;TZID=America/New_York:20260127T210000
DTSTAMP:20260418T114102
CREATED:20260115T150256Z
LAST-MODIFIED:20260115T150317Z
UID:64728-1769544000-1769547600@www.pwsausa.org
SUMMARY:Colors of Hope Listening Session
DESCRIPTION:When: Tuesday\, January 27 \n@ 8pm ET | 5pm PT\nWhere: ZOOM\nREGISTER HERE\n\nWant to know how we can improve outcomes for more people in our PWS Community? Come join the Colors of Hope group as they present findings from a series of Listening Sessions and surveys with the families of color affected by Prader-Willi syndrome. The goal of this presentation is to create a shared understanding of the challenges and opportunities ahead. 
URL:https://www.pwsausa.org/event/colors-of-hope-listening-session/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251207T120000
DTEND;TZID=America/New_York:20251207T160000
DTSTAMP:20260418T114102
CREATED:20250806T191825Z
LAST-MODIFIED:20250806T194409Z
UID:60680-1765108800-1765123200@www.pwsausa.org
SUMMARY:Claus for a Cause
DESCRIPTION:VISIT EVENT PAGE \nJoin us for Claus for a Cause on Sunday\, December 7th from 12-4 PM at the Bridgeville VFD Station 117 in Bridgeville\, PA.This community event brings us together to support children living with Prader-Willi Syndrome. This family-friendly celebration includes pictures with Santa\, a healthy meal and kid-friendly seasonal activities. \nWe are a dedicated team of families from the greater Pittsburgh area working together to bring this magical event to life. Holidays can be especially challenging for families like ours\, as the season poses unique challenges for children with PWS due to their dietary restrictions. That’s why this event focuses on what truly matters—creating joyful memories\, fostering connection and celebrating the season through togetherness and inclusion. We’re grateful for the support of our community near and far and hope you’ll join us in making a meaningful impact. \nEvery dollar raised will go directly to the Prader-Willi Syndrome Association (PWSA | USA) to fund advocacy\, family support\, and vital research to find a treatment for PWS. \nPWS is a rare genetic condition that occurs in 1:15\,000-30\,000 live births and begins with low muscle tone\, feeding difficulties\, and delayed development. By childhood\, it evolves into a relentless hunger that dominates daily life in addition to behavioral and academic challenges. For those living with PWS\, their syndrome is just one part of who they are\,  but it significantly impacts the individual and their family’s world\, now and forever. With your support\, we can give those living with PWS a chance at independence and freedom from hunger. \nFor a list of Frequently Asked Questions Click Here \nFor questions\, please contact us at pghpws@gmail.com. \nConnect with us on Facebook to stay up-to-date about event details: HERE
URL:https://www.pwsausa.org/event/claus-for-a-cause/
LOCATION:Bridgeville VFD Station 117\, 370 Commercial St.\, Bridgeville\, Pennsylvania\, 15017
CATEGORIES:Pennsylvania
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251121T190000
DTEND;TZID=America/New_York:20251121T210000
DTSTAMP:20260418T114102
CREATED:20250915T171149Z
LAST-MODIFIED:20250915T171723Z
UID:61679-1763751600-1763758800@www.pwsausa.org
SUMMARY:A Bow for Áine Mirella: Performance for PWS
DESCRIPTION:VISIT EVENT PAGE\nThe name of this event is inspired by Áine’s frequent wearing of a myriad of adorable bows but is also about taking a bow\, as this is a concert fundraiser. \nIrene Moretto (“Mamma” of Áine) and Kaitlyn Waterson will perform musical selections for piano and voice centered around the wondrous and awe-filled experiences of infancy\, childhood\, and motherhood.  Selections will include Robert Schumann’s Scenes from Childhood as well as vocal selections by Francis Poulenc\, Eric Whitacre\, Amy Beach and more! All ages are welcome! \nThis program was inspired by Irene’s daughter\, Áine Mirella\, born on August 22\, 2024\, who has Prader-Willi Syndrome.  It is our hope to raise awareness for PWS and support funding towards research for PWS\, but to also let people know about Áine as a child of joy. \nA Prader -Willi Syndrome-friendly reception will follow the concert as a chance to reflect on the music heard\, meet each other\, and celebrate Áine Mirella and all of our PWS community.
URL:https://www.pwsausa.org/event/a-bow-for-aine-mirella-performance-for-pws/
LOCATION:Main Line Unitarian Church\, 816 South Valley Forge Road\, Devon\, PA\, 19333\, United States
CATEGORIES:Pennsylvania
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251101
DTEND;VALUE=DATE:20260101
DTSTAMP:20260418T114102
CREATED:20251030T193355Z
LAST-MODIFIED:20251202T144109Z
UID:62748-1761955200-1767225599@www.pwsausa.org
SUMMARY:PWSA | USA's 2025 Angel Drive Campaign
DESCRIPTION:Give the Gift of Hope this Holiday Season!\nCLICK HERE TO MAKE AN IMPACT \nVisit the Angel Drive Hub \n\n\n\n\nThe 2025 Angel Drive is PWSA | USA’s largest annual fundraising campaign\, dedicated to bringing hope and essential support to families and individuals impacted by Prader-Willi syndrome (PWS). This year\, your gift is especially meaningful as we celebrate PWSA | USA’s 50th Anniversary. \nNow more than ever\, your support fuels our forward motion. We’re moving from hoping for a treatment to preparing for many therapies – targeting the full spectrum of challenges in PWS: behavior\, metabolism\, cognition\, independence\, and more. We’re expanding early diagnosis so that every child\, regardless of race\, location\, or resources gets support from day one. And we’re closing the gap between what exists and what’s possible. Your gift makes this real. \nThe next 50 years begin now\, with us. 
URL:https://www.pwsausa.org/event/pwsa-usas-2025-angel-drive-campaign/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251022T170000
DTEND;TZID=America/New_York:20251022T170000
DTSTAMP:20260418T114102
CREATED:20250515T201140Z
LAST-MODIFIED:20250829T170715Z
UID:58948-1761152400-1761152400@www.pwsausa.org
SUMMARY:Prader-Silly: A Night of Rare Laughs
DESCRIPTION:CLICK HERE TO LEARN MORE AND PURCHASE TICKETS! \nWhen: Wednesday\, October 22\, 2025\nDoors open at 5:00 PM | Show starts at 7:30 PM\nWhere: Zanies Comedy Club Nashville (2025 8th Ave S\, Nashville\, TN 37204) \nHey Nashville! it’s time to laugh in rare form. On Wednesday\, October 22\, 2025\, the iconic Zanies Comedy Club will host Prader Silly: A Night of Rare Laughs—a one-night-only comedy fundraiser benefiting the Prader-Willi Syndrome Association | USA\, hosted by PWS parents Aaron Weber and Lucy Sinsheimer of Nashville.  \nJoin comedian 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 featuring Aaron and Lucy on WSMV Channel 4 show “Nashville Today\,” which aired on PWS Awareness Day (May 15th\, 2025). \nProgram includes: \n5:00 PM – Doors Open \n5:00 – 7:15 PM \n– View and Bid on Silent Auction items \n– Cocktail Hour / Food Available \n7:15 PM – Be Seated \n7:30-9 PM – Comedy \n9:00 PM – Silent Auction Items Pick-Up \nWe hope to see you there!
URL:https://www.pwsausa.org/event/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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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251018T183000
DTEND;TZID=America/New_York:20251018T233000
DTSTAMP:20260418T114102
CREATED:20250619T170619Z
LAST-MODIFIED:20250619T171057Z
UID:59594-1760812200-1760830200@www.pwsausa.org
SUMMARY:Answers for Audrey 2025
DESCRIPTION:We’re thrilled to invite you to an evening of fun\, community\, and purpose at the 5th Annual Answers for Audrey Trivia Night. \nCan you believe it’s already Year 5? \n \nOur daughter\, Audrey Rose\, was diagnosed with Prader-Willi Syndrome (PWS) on December 19\, 2020. \nPWS is a rare genetic disorder caused by a missing segment on chromosome 15\, affecting approximately 1 in 25\,000 births. It brings with it a wide range of challenges\, including poor growth\, low muscle tone\, intellectual disabilities\, and an insatiable hunger that can lead to life-threatening obesity. \nTogether with this incredible community\, we remain committed to advancing research and supporting treatment efforts. \nFor those who have followed Audrey’s journey\, you may have seen the exciting news — a new drug has recently been approved by the FDA! This is a major breakthrough and a reason to celebrate. Let’s make this year’s trivia night a joyful tribute to how events like ours have contributed to meaningful progress. \nWe are truly grateful for your continued support of Audrey and our cause. \nCLICK HERE TO PURCHASE TICKETS\n \nFor questions or to get involved\, please contact Michelle or Michael:  AnswersForAudrey@gmail.com or 636-634-5601
URL:https://www.pwsausa.org/event/answers-for-audrey-2025/
LOCATION:Incarnate Word Academy\, 2788 Normandy Ave.\, St. Louis\, MO\, 63121\, United States
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251018T183000
DTEND;TZID=America/New_York:20251018T183000
DTSTAMP:20260418T114102
CREATED:20250505T133407Z
LAST-MODIFIED:20250505T133407Z
UID:58594-1760812200-1760812200@www.pwsausa.org
SUMMARY:Cocktails for a Cause
DESCRIPTION:CLICK HERE TO PURCHASE TICKETS AND LEARN MORE \nJoin us for an unforgettable evening of support\, hope\, and community.  Hosted at the scenic and historic Brown’s Brewing Company Malt Room\, this event will bring together families\, friends\, and supporters for an inspiring evening of cocktails\, conversation\, and compassion\, all aimed at raising awareness and funds for Prader-Willi syndrome (PWS). \nGuests will enjoy signature cocktails\, delicious hors d’oeuvres\, and the unique ambiance of the Malt Room\, known for its charm and exceptional service. The night will feature engaging speakers\, including families impacted by PWS\, as well as opportunities to learn more about the syndrome and how funds raised will directly benefit those affected by it. The event will also offer a raffle\, silent auction\, and other interactive ways to contribute to this important cause. \nPWS is a rare\, complex genetic disorder that affects multiple systems in the body\, often leading to challenges with hunger regulation\, cognitive development\, and behavior. Funds raised at this event will support research\, family resources\, and advocacy initiatives aimed at improving the lives of those with PWS.
URL:https://www.pwsausa.org/event/cocktails-for-a-cause/
LOCATION:The Malt Room at Brown’s Brewery\, 417 River Street\, Troy\, NY\, United States
CATEGORIES:New York
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251011T153000
DTEND;TZID=America/New_York:20251011T153000
DTSTAMP:20260418T114102
CREATED:20250505T133907Z
LAST-MODIFIED:20250505T133907Z
UID:58598-1760196600-1760196600@www.pwsausa.org
SUMMARY:2nd Annual Dance Silly for Prader-Willi
DESCRIPTION:CLICK HERE TO PURCHASE TICKETS AND LEARN MORE \nJoin us for the 2nd annual Dance Silly for Prader-Willi event—a lively celebration to support the Prader-Willi Syndrome Association USA! This special occasion honors our daughter Jayda’s journey with PWS and the invaluable support we’ve received from this incredible organization. \nGet ready for a FUN\, FAMILY\, DANCE PARTY like no other! Set against the backdrop of Halloween—a season that poses unique challenges for children with PWS due to their dietary restrictions—this event aims to spotlight inclusivity and emphasize that holidays are about more than just treats. It’s all about creating joyous\, memorable experiences and cherishing time together. \nEvent Highlights: \n\nDance to the beats with our energetic DJ\nRock your favorite costume for a festive twist\nEnjoy exciting games and a creative craft station\nSport fun and colorful face painting\nParticipate in kids and adult raffles for fabulous prizes\nSavor delicious family dinner\n\nWhether you’re looking to sponsor\, donate a raffle basket\, or volunteer\, we would love your support. Reach out to us at mhampton0933@gmail.com to get involved. \nLet’s make this a night to remember as we Dance Silly for Prader-Willi!
URL:https://www.pwsausa.org/event/2nd-annual-dance-silly-for-prader-willi/
LOCATION:Trumbull Career & Technical Center\, 528 Educational Hwy NW\, Warren\, OH\, 44483\, United States
CATEGORIES:Ohio
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/05/DSPW-Colors-Fonts-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250926T180000
DTEND;TZID=America/New_York:20250926T220000
DTSTAMP:20260418T114102
CREATED:20250102T162435Z
LAST-MODIFIED:20250818T194516Z
UID:55659-1758909600-1758924000@www.pwsausa.org
SUMMARY:PWSA | USA's 50th Anniversary Celebration: Journey of Hope Gala
DESCRIPTION:50th Anniversary Celebration: Journey of Hope Gala \nCLICK HERE TO PURCHASE TICKETS\nJoin PWSA | USA as we celebrate 50 years of support\, research\, and community at our Journey of Hope Gala. \nDate: Friday\, September 26\, 2025\, from 6 PM – 10 PM\nLocation: Ritz Carlton\, St. Louis\, MO \nTogether\, we will reflect on the milestones we’ve achieved and the lives we’ve touched\, all while raising crucial funds to continue our journey of hope for the next 50 years. This event will feature inspiring stories\, special tributes\, live entertainment\, and a silent auction\, all in support of PWSA | USA’s mission: Enhancing the quality of life and empowering those affected by Prader-Willi syndrome.
URL:https://www.pwsausa.org/event/pwsa-usas-50th-anniversary-celebration-journey-of-hope-gala/
LOCATION:The Ritz-Carlton\, St. Louis\, 100 Carondelet Plaza\, St. Louis\, MO\, 63105\, United States
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/01/Top-Pick.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250913T130000
DTEND;TZID=America/New_York:20250913T130000
DTSTAMP:20260418T114102
CREATED:20250417T204416Z
LAST-MODIFIED:20250417T204416Z
UID:58183-1757768400-1757768400@www.pwsausa.org
SUMMARY:16th Annual Hunter Lens Golf Tournament
DESCRIPTION:LEARN MORE AND REGISTER TO ATTEND HERE \nWhen: Saturday\, September 13\, 2025 | 1:00 PM ET\nWhere: Heritage Hills Golf Club\, 17 Heritage Hill Drive\, Lakeville\, MA \nJoin the Lens family for a day of golf\, good spirits\, and great friends as you golf and dine at Heritage Hills Golf Club in Lakeville\, MA. This event is celebrating its 16th year raising critical funding for PWSA | USA\, an organization that serves individuals living with PWS\, their families\, caregivers\, and more through family support\, advocacy\, and research. \nHunter Lens is 27 years old and has Prader-Willi syndrome. He leads a happy\, active life despite his daily challenges. He has friends\, a loving family and his weight is under control. Supporting PWSA | USA\, a non-profit\, will open more doors for Hunter and others who live with PWS\, which ultimately means a better life. Hunter deserves a better life. Please join us on this special day in honor of Hunter to benefit PWSA | USA’s mission.
URL:https://www.pwsausa.org/event/16th-annual-hunter-lens-golf-tournament/
LOCATION:Heritage Hills Golf Club\, 17 Heritage Hill Drive\, Lakeville\, MA\, 02347\, United States
CATEGORIES:Massachusetts
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250906T123000
DTEND;TZID=America/New_York:20250906T170000
DTSTAMP:20260418T114102
CREATED:20250602T163708Z
LAST-MODIFIED:20250602T163708Z
UID:59296-1757161800-1757178000@www.pwsausa.org
SUMMARY:4th Annual No Gimmes For Jimmy Charity Golf Outing
DESCRIPTION:To Register as a GOLFER or a TEAM click here \nJoin us for a day on the links on Saturday\, September 6\, 2025 at Heron Glen Golf Course in Ringoes\, NJ in remembrance of Jim Worthington. A portion of the proceeds will be donated to PWSA\, in Jim’s name. This event is inclusive for golfers and non-golfers alike – all skill levels are welcome. \nWhile he survived being directly under Tower 1 on 9/11\, Jim Worthington eventually lost his battle with leukemia on October 16\, 2021. He loved to play golf when he could get out — which was not often. He loved his family even more\, including his son with Prader-Willi Syndrome. \nPrader-Willi Syndrome (PWS) is rare and most people\, including many physicians\, caregivers\, as well as new parents and family members\, are not familiar with this syndrome. The symptoms are many and include a continuous urge to eat\, a need for fewer calories to maintain weight\, and cognitive development issues. Those impacted by PWS know there is far more to the syndrome than eating and weight gain and are often under incredible stress. For more information regarding PWS\, please visit: https://pwsausa.org/what-is-prader-willi-syndrome/. \nA “gimme” in golf is usually a short putt that is excused by one’s opponent for playing because it is considered too easy to miss. Jim was as generous on the golf course as he was in life\, and his wish was that any “gimmes” go to helping those individuals and families with PWS. \nWe started the No Gimmes for Jimmy Annual Charity Golf Outing to raise money and awareness for PWS\, while having some fun and remembering a great family man. \nJim didn’t get a “gimme” on October 16th\, but what he’d want just as much is for you to give to this remarkable charity. So\, we’re asking you to contribute a “gimme” in Jim’s honor to PWSA and join us for a day of fun on the course in his honor. \nEvent Schedule\n– 12:30 PM Sign-in & Warm Up! Sign-in at the event table and hit the putting green/driving range before the opening ceremony\n– 1:30 PM Shotgun Start. All teams will tee-off at their respective starting holes at 1:30 PM\n– 6/6:30 PM Awards dinner & Raffle Join us for a celebratory dinner as we announce various prizes and host our raffle!
URL:https://www.pwsausa.org/event/4th-annual-no-gimmes-for-jimmy-charity-golf-outing/
LOCATION:Heron Glen Golf Course\, 110 State Highway 202 & 31\, Ringoes\, NJ\, 08551\, United States
CATEGORIES:New Jersey
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250819T200000
DTEND;TZID=America/New_York:20250819T210000
DTSTAMP:20260418T114102
CREATED:20250729T214148Z
LAST-MODIFIED:20250729T214148Z
UID:60454-1755633600-1755637200@www.pwsausa.org
SUMMARY:TEMPO PWS Clinical Trial Webinar with Harmony Biosciences
DESCRIPTION:Hear New Details About the TEMPO Clinical TrialTuesday\, August 19\, 2025 | 8:00 p.m. EST / 5:00 p.m. PSTHosted by PWSA | USA\, Free Virtual Webinar via Zoom \nREGISTER HERE \nJoin PWSA | USA and representatives from Harmony Biosciences in an upcoming free webinar to hear new information about the TEMPO PWS Clinical Trial. This global Phase 3 study is investigating pitolisant as a potential treatment for excessive daytime sleepiness (EDS) in individuals aged six and older with Prader-Willi syndrome. \nHarmony will walk through updates to the trial experience\, answer questions\, and share how families can get involved. Several trial sites are currently open and actively recruiting participants. \nLearn more about the study at: https://www.tempopwsstudy.com
URL:https://www.pwsausa.org/event/tempo-pws-clinical-trial-webinar-with-harmony-biosciences/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250624
DTEND;VALUE=DATE:20250629
DTSTAMP:20260418T114102
CREATED:20240306T224638Z
LAST-MODIFIED:20241015T142007Z
UID:49150-1750723200-1751155199@www.pwsausa.org
SUMMARY:2025 United In Hope: International Prader-Willi Syndrome Conference
DESCRIPTION:PWSA | USA is pleased to announce a new partnership with the Foundation for Prader-Willi Research (FPWR) and the International Prader-Willi Syndrome Organisation (IPWSO) to host United in Hope – an International PWS Conference to be held June 24-28\, 2025 at the Arizona Grand Resort and Spa in Phoenix\, Arizona! \nThe conference theme\, “United in Hope” reflects this unique collaboration\, which we anticipate will serve as a catalyst for the largest international PWS conference ever held. \nPlease mark these dates in your calendars! Further information will be made available soon. \nVISIT THE WEBSITE HERE
URL:https://www.pwsausa.org/event/2025-united-in-hope-international-prader-willi-syndrome-conference/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250604T120000
DTEND;TZID=America/New_York:20250604T130000
DTSTAMP:20260418T114102
CREATED:20250529T182850Z
LAST-MODIFIED:20250529T182850Z
UID:59192-1749038400-1749042000@www.pwsausa.org
SUMMARY:First-Time Attendee Info Session: What to Expect at the 2025 International PWS Conference
DESCRIPTION:When: Wednesday\, June 4\, 2025 | 12:00 PM ET / 9:00 AM PT\nWhere: Online via ZOOM \nIs this your first time attending a PWS Conference? Wondering how the Family Program works or what exciting events are planned? We’ve got you covered! Join Kristi Rickenbach\, PWSA | USA Parent Support Coordinator\, and Stacy Ward\, PWSA | USA CEO\, for a special info session designed just for first-time attendees. They’ll walk you through the Family Program schedule\, share helpful tips\, and highlight some of the can’t-miss moments at this year’s conference in Phoenix. The first portion of the webinar will be recorded\, including the overview and tips from Stacy and Kristi. However\, the live Q&A that follows will not be recorded\, so be sure to join us live to ask your questions! This is your chance to get answers\, connect with other new attendees\, and feel confident and excited heading into conference week. Use the link below to join us on June 4 at 12:00 PM ET. \nWEBINAR LINK: https://us02web.zoom.us/j/83720110968?jst=1 
URL:https://www.pwsausa.org/event/first-time-attendee-info-session-what-to-expect-at-the-2025-international-pws-conference/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250520T200000
DTEND;TZID=America/New_York:20250520T210000
DTSTAMP:20260418T114102
CREATED:20250513T183627Z
LAST-MODIFIED:20250513T183627Z
UID:58872-1747771200-1747774800@www.pwsausa.org
SUMMARY:
DESCRIPTION:CLICK HERE TO REGISTER \nPWSA | USA is excited to host representatives from Aardvark Therapeutics for a FREE webinar opportunity to share details about their HERO Phase 3 clinical trial of ARD-101. \nWhen: Tuesday\, May 20\, 2025\nTime: 8 PM ET / 5 PM PT \nThis is your chance to:\n– Learn about the HERO Phase 3 clinical trial of ARD-101\, a potential treatment for hyperphagia and behavioral disturbances in PWS.\n– Find out where trial sites are located and which are currently open and actively enrolling participants.\n– Ask your questions directly to the Aardvark team. \nWith the help of our community\, this groundbreaking treatment could move one step closer to FDA approval\, bringing hope and new options to those who need it most. For more information on the HERO Study\, please see their website at https://www.heroforpws.com/. \nDon’t miss this opportunity to be part of the future of PWS treatment!
URL:https://www.pwsausa.org/event/58872/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250515T110000
DTEND;TZID=America/New_York:20250515T230000
DTSTAMP:20260418T114102
CREATED:20250505T153933Z
LAST-MODIFIED:20250513T185213Z
UID:58607-1747306800-1747350000@www.pwsausa.org
SUMMARY:Dine for a Cause This PWS Awareness Day – May 15 in Pennsylvania!
DESCRIPTION:Pennsylvania Families and Friends! \nThere’s an Easy and Delicious Way to Support PWSA | USA on May 15 – PWS Awareness Day \nOn Thursday\, May 15\, 2025\, several restaurants across Pennsylvania are generously donating a portion of their sales to PWSA | USA in honor of Prader-Willi Syndrome Awareness Day. Whether you dine in\, take out\, or order online\, your meal can make a meaningful impact. Scroll below to get specific details for each participating restaurant. \n\nApplebee’s Tarentum\, PA location will donate 15% of your check to PWSA | USA! \nLocation: 1050 Village Center Drive\, Tarentum\, PA 15084Time: 11 AM – Close\nPhone Number: (724) 274-5019 \n\nDine-in: Print and show the flyer to your server (download below).\n\nTo-Go orders: Place your order at applebees.com\, and use promo code DOINGOOD at checkout. \nAPPLEBEE’S FLYER \n\nBJ’s Restaurant & Brewhouse is generously hosting a PWS Awareness Day fundraiser at the following Pennsylvania locations from 11 AM – 11 PM: \nAllentown\, PA \n\nAddress: 665 N Krocks Rd\, Allentown\, PA 18106\nPhone Number: (484) 268-2340\n\nLancaster\, PA \n\nLocation: 925 Plaza Blvd\, Lancaster\, PA 17601\nPhone Number: (717) 320-8840\n\nUpper St. Clair\, PA \n\nLocation: 1819 Washington Rd\, Upper St. Clair\, PA 15241\nPhone Number: (412) 347-4790\n\nWhether you dine in\, order takeout\, or use curbside pickup\, BJ’s will donate 20% of food and soft beverage sales to PWSA | USA – as long as you show their special fundraiser flyer with the barcode at your chosen location \nFind the flyers below (download the one for the location closest to you). There\, you’ll also find details about online orders. \nBJ’S ALLENTOWN FLYER \nBJ’S LANCASTER FLYER \nBJ’S UPPER ST. CLAIR FLYER \n\nRed Robin Greensburg\, PA location is donating 20% of food sales to PWSA | USA! \nLocation: 1000 Greengate Centre Cir.\, Greensburg\, PA 15601\nTime: 11 AM – Close\nPhone Number: (724) 834-4444 \nDine-in: Mention the fundraiser or show the flyer (download below). \nOnline orders: \n\nGo to redrobin.com/order and select the Greensburg location\nAdd the item from the “Fundraisers (To-Go Only)” category to your cart\n\nAdd your meal items and check out as usual. \nRED ROBIN FLYER \n\nJoin Ruby Tuesday’s Somerset\, PA location’s community giveback program! They’ll donate 15% of your purchase to PWSA | USA when you present the flyer to your server. \nLocation: 1019 North Center Ave.\, Somerset\, PA 15501Time: 4 PM – 10 PM\nPhone Number: (814) 445-3934 \nDownload the flyer below. \nRUBY TUESDAY FLYER
URL:https://www.pwsausa.org/event/dine-for-a-cause-this-pws-awareness-day-may-15-in-pennsylvania/
CATEGORIES:Pennsylvania
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250515T000000
DTEND;TZID=America/New_York:20250530T000000
DTSTAMP:20260418T114102
CREATED:20250513T185930Z
LAST-MODIFIED:20250513T185930Z
UID:58878-1747267200-1748563200@www.pwsausa.org
SUMMARY:Dine for a Cause This PWS Awareness Month – May 15 & May 30 in Louisiana!
DESCRIPTION:Louisiana Families and Friends! \nThere’s an Easy and Delicious Way to Support PWSA | USA this PWS Awareness Month. \nOn two dates in May\, Thursday\, May 15\, 2025 and Friday\, May 30\, 2025\, several restaurants across Louisiana are generously donating a portion of their sales to PWSA | USA in honor of Prader-Willi Syndrome Awareness Month. Whether you dine in\, take out\, or order online\, your meal can make a meaningful impact. Scroll below to get specific details for each participating restaurant. \n\nBJ’s Restaurant & Brewhouse is generously hosting a PWS Awareness Day fundraiser at the following Louisiana locations from 11 AM – 11 PM: \nBaton Rouge\, LA \n\nLocation: 6401 BlueBonnet Blvd. #740\, Baton Rouge\, LA 70836\nPhone Number: (225) 766-4300\n\nLafayette\, LA \n\nLocation: 4511 Ambassador Caffery Pkwy\, Lafayette\, LA 70508\nPhone Number: (337) 761-6300\n\nSlidell\, LA \n\nLocation: 140 Town Center Pkwy\, Slidell\, LA 70458\nPhone Number: (985) 605-0120\n\nWhether you dine in\, order takeout\, or use curbside pickup\, BJ’s will donate 20% of food and soft beverage sales to PWSA | USA – as long as you show their special fundraiser flyer with the barcode at your chosen location \nFind the flyers below (download the one for the location closest to you). There\, you’ll also find details about online orders. \nBJ’S BATON ROUGE FLYER \nBJ’S LAFAYETTE FLYER \nBJ’S SLIDELL FLYER \n\nGrab a coffee\, lunch\, or dinner at one of the three participating Panera Bread locations in Louisiana\, and 20% of net sales will be donated to PWSA | USA! \nDates: \n\nBaton Rouge locations – Thursday\, May 15\, 2025\nCovington location – Friday\, May 30\, 2025\n\nTime: All day \nParticipating Cafés: \n\nBaton Rouge – 5000 Hennessey Dr.\, Baton Rouge\, LA (May 15)\nBaton Rouge – 7877 Jefferson HWY\, Baton Rouge\, LA (May 15)\nCovington – 70411 Highway 21\, Covington\, LA (May 30)\n\nHow to Make It Count: \n\nIn-Café Orders: Show a printed or electronic version of the fundraiser flyer when ordering.\nOnline Orders & App: Use promo code FUND4U at checkout via panerabread.com\, the Panera App\, or at the in-café kiosk.\nOrders placed all day at these locations will count!\n\nDownload the flyer for the location closest at the buttons below and help support the Prader-Willi syndrome community with every bite. \nPANERA BATON ROUGE HENNESSEY DRIVE FLYER \nPANERA BATON ROUGE JEFFERSON HWY FLYER \nPANERA COVINGTON FLYER
URL:https://www.pwsausa.org/event/dine-for-a-cause-this-pws-awareness-month-may-15-may-30-in-louisiana/
CATEGORIES:Louisiana
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250514T120000
DTEND;TZID=America/New_York:20250514T130000
DTSTAMP:20260418T114102
CREATED:20250411T155728Z
LAST-MODIFIED:20250411T155728Z
UID:58113-1747224000-1747227600@www.pwsausa.org
SUMMARY:Free Webinar: Creating Financial Security for a Loved One with PWS with Ivailo Grigorov
DESCRIPTION:CLICK HERE TO REGISTER \nWhen: Wednesday\, May 14\, 2025 | 9:00 AM PT / 12:00 PM ET\nWhere: Virtual via Zoom\nFree for anyone to attend! \nAbout Ivailo Grigorov \nIvailo Grigorov is a Financial Advisor and special needs parent to Lucca\, who is 8 years old and has a diagnosis of Prader-Willi Syndrome. After 15 years as a Store Director at Target\, Lucca inspired Ivailo to change career paths and pursue special needs planning. Ivailo realized that families can benefit from a comprehensive plan that can guide them through the years and can ultimately maximize a child’s overall quality of life. Ivailo’s team primarily works with families who have a loved one with disabilities that will require some support not only now but in the distant future. There are many common mistakes in traditional planning that if not properly addressed can hinder access to programs and benefits. Ivailo’s goal is to serve as the quarterback for the family’s planning\, to educate on the most efficient ways to save to optimize and protect our loved ones’ futures and ultimately provide a piece of mind. Join us for this educational workshop to learn more about special needs planning. Topics covered will include an overview of SSI & SSDI\, Medicaid & Waivers\, ABLE accounts\, special needs trusts\, and other important considerations to help family members better understand how planning for a child with special needs is different both legally & financially.
URL:https://www.pwsausa.org/event/free-webinar-creating-financial-security-for-a-loved-one-with-pws-with-ivailo-grigorov/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250503T090000
DTEND;TZID=America/New_York:20250503T090000
DTSTAMP:20260418T114102
CREATED:20250127T145246Z
LAST-MODIFIED:20250127T145246Z
UID:56203-1746262800-1746262800@www.pwsausa.org
SUMMARY:NC Hope United 5K & Family Fun Run
DESCRIPTION:When: Saturday\, May 3\, 2025 | 9:00 AM\nWhere: Greater Wilson Rotary Park (1901 Branch St NW\, Wilson\, NC 27893) \nCLICK HERE TO REGISTER!\n \nEarly bird ticket pricing ends March 20th! \nRegister to ATTEND or SPONSOR the NC Hope United 5K & Family Fun Run in support of individuals living with Prader-Willi Syndrome! Proceeds from this event will benefit PWSA | USA’s Advocacy\, Family Support\, and Research programs to find a treatment for PWS.
URL:https://www.pwsausa.org/event/nc-hope-united-5k-family-fun-run/
LOCATION:Greater Wilson Rotary Park\, 1901 Branch St NW\, Wilson\, NC\, 27893\, United States
CATEGORIES:North Carolina
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250501
DTEND;VALUE=DATE:20250601
DTSTAMP:20260418T114102
CREATED:20250312T183158Z
LAST-MODIFIED:20250312T183158Z
UID:57457-1746057600-1748735999@www.pwsausa.org
SUMMARY:PWS Awareness Month
DESCRIPTION:Throughout May\, Help Shine a Light on Prader-Willi Syndrome Awareness Month! \nThe month of May is an important time for our rare disease community because it’s recognized as Prader-Willi Syndrome Awareness Month. While advocacy efforts\, the fight for research advancements\, and celebration of our loved ones is important 365 days a year\, the 31 days in May offer an opportunity to really show off our PWS pride. Throughout this email\, we share several different ways YOU can make an impact! \nPWSA | USA has created several graphics designed to help you raise awareness on social media and in your community. From profile photos to flyers and a printable yard sign\, this toolkit equips you with everything you need to make a difference. Let’s unite to educate others about PWS and show our support for those living with this rare genetic disorder. Together\, we can make a meaningful impact and foster greater understanding and acceptance. Visit PWSA | USA’s website by CLICKING HERE to access the toolkit and start spreading awareness! \nOur Spotlight on Hope series strives to share and celebrate the successes of our loved ones. No success is too small! Whether they took their first steps\, had a great time at the school dance\, made a shot in a basketball game\, or are working towards a goal\, we want to celebrate it all. If you’d like to honor your loved one and share their success story with the PWS community\, please fill out our Spotlight on Hope form at https://www.pwsausa.org/get-involved/share-your-story/. We’re looking forward to celebrating with you!
URL:https://www.pwsausa.org/event/pws-awareness-month/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250501
DTEND;VALUE=DATE:20250601
DTSTAMP:20260418T114102
CREATED:20250312T181720Z
LAST-MODIFIED:20250312T181720Z
UID:57455-1746057600-1748735999@www.pwsausa.org
SUMMARY:United We Brunch
DESCRIPTION:We are excited to introduce the United We Brunch initiative\, a nationwide effort designed to bring people together to connect\, share experiences\, gain the resources\, and support our community needs. United We Brunch is about fostering hope – one brunch\, one state\, and one family at a time – uniting communities and creating a ripple effect of awareness and compassion across the country. \nAnyone can host a United We Brunch event! It’s easy and can be as casual or fancy as you’d like. From picking up muffins and putting on a pot of coffee to catering a high tea and arranging flowers\, your time and imagination are the only limits. \nYou can host at home\, partner with a family member\, or even reserve a room at your favorite brunch spot. It’s all up to you! \nWith your help\, we can grow this initiative so that every May\, during PWS Awareness Month\, there will be a wave of support that increases in momentum every year. Imagine knowing that every May\, nationwide\, new groups are gathering to help shine a light on PWS for all of us. It starts here\, it starts now\, it starts with you. \nCLICK HERE TO GET STARTED \nCLICK HERE TO DOWNLOAD THE UNITED WE BRUNCH TOOLKIT
URL:https://www.pwsausa.org/event/united-we-brunch/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250426T120000
DTEND;TZID=America/New_York:20250426T133000
DTSTAMP:20260418T114102
CREATED:20250318T190821Z
LAST-MODIFIED:20250318T190821Z
UID:57561-1745668800-1745674200@www.pwsausa.org
SUMMARY:PWS Symposium: Recognizing and Addressing Hyperphagia Early in Prader-Willi Syndrome
DESCRIPTION:CLICK HERE TO REGISTER \nJoin PWSA | USA\, The Endocrine Society\, and Medscape Education for this live symposium on Prader Willi syndrome (PWS) where experts will explore the huge burden that hyperphagia represents for patients with PWS\, their families\, and their caregivers. They will delve into the pathophysiology and complications of hyperphagia and look to the future in a discussion around the current and emerging treatment options for hyperphagia in PWS. By incorporating patient case examples and the latest data\, the speakers will exchange ideas around best practices to ensure improved quality of life for patients with PWS and those around them. There will be the opportunity for attendees to ask questions of the experts during this symposium. This educational activity is intended for an audience of pediatricians\, endocrinologists\, psychiatrists\, geneticists\, nurse practitioners\, physician assistants\, nurses\, and other clinicians who care for patients with PWS in the United States. \nSpeakers Include\nShawn McCandless\, MD\, Chair\, Department of Genetics and Metabolism (Children’s Hospital Colorado)\, Professor and Section Head\, Genetics and Metabolism (University of Colorado Anschutz Medical Campus)\nParisa Salehi\, MD\, Associate Professor\, Division of Endocrinology & Diabetes\, Clinical Director\, Prader-Willi Syndrome Clinic (Seattle Children’s)\nDeepan Singh\, MD\, ​Child\, Adolescent\, and Adult Psychiatrist\, ​Vice-Chair of Ambulatory Psychiatry Services (Maimonides Medical Centre) \nAdditional Details\nIn support of improving patient care\, Medscape\, LLC is jointly accredited with commendation by the Accreditation Council for Continuing Medical Education (ACCME)\, the Accreditation Council for Pharmacy Education (ACPE)\, and the American Nurses Credentialing Center (ANCC)\, to provide continuing education for the healthcare team. \nFor Physicians\nMedscape\, LLC designates this live activity for a maximum of 1.0 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. \nFor Nurses\nAwarded ​1.0​ contact hour(s) of nursing continuing professional development for RNs and APNs. \nSupported by an independent educational grant from Soleno Therapeutics Inc.
URL:https://www.pwsausa.org/event/pws-symposium-recognizing-and-addressing-hyperphagia-early-in-prader-willi-syndrome/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250422T210000
DTEND;TZID=America/New_York:20250422T220000
DTSTAMP:20260418T114102
CREATED:20250417T204729Z
LAST-MODIFIED:20250417T204729Z
UID:58187-1745355600-1745359200@www.pwsausa.org
SUMMARY:PWS Community Town Hall: Sharing Experiences with VYKAT XR
DESCRIPTION:CLICK HERE TO REGISTER \nWhen: Tuesday\, April 22\, 2025 | 9:00 PM ET / 6:00 PM PT \n\nPWS families and caregivers are invited to a virtual town hall focused on VYKAT XR\, the first FDA-approved medication for treating hyperphagia in individuals with Prader-Willi syndrome (PWS) ages 4 and older. This informal\, community-led town hall is a no-host forum designed for families and caregivers to share their personal experiences with VYKAT XR\, ask questions\, and learn from one another.\n\n\n\nPlease note: This session is intended for peer-to-peer discussion. Medical advice will not be provided.\n\n\n\nThis town hall is intended for U.S.-based caregivers of individuals with Prader-Willi syndrome. PWSA | USA and FPWR will verify all registrants to confirm caregiver status to ensure a safe and supportive environment. Registration will only be approved once verification is complete.\n\n\n\nFor the privacy of our attendees\, the town hall will not be recorded.
URL:https://www.pwsausa.org/event/pws-community-town-hall-sharing-experiences-with-vykat-xr/
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DTSTART;TZID=America/New_York:20250416T121500
DTEND;TZID=America/New_York:20250416T121500
DTSTAMP:20260418T114102
CREATED:20250331T200749Z
LAST-MODIFIED:20250331T200749Z
UID:57809-1744805700-1744805700@www.pwsausa.org
SUMMARY:Free Live Webinar: Understanding VYKAT XR – The First FDA-Approved Treatment for Hyperphagia in PWS
DESCRIPTION:Date: Wednesday\, April 16\, 2025Time: 9:15 AM PT | 12:15 PM ETLocation: Virtual via ZOOM\nFree for anyone to attend \nREGISTER HERE \nThe Prader-Willi syndrome (PWS) community has reached a historic milestone – VYKAT XR (formerly known as DCCR in clinical trials) is now FDA-approved as the first-ever treatment for hyperphagia in PWS. To help families\, caregivers\, and healthcare providers understand what this means\, Soleno Therapeutics and Medlive\, in partnership with PWSA | USA and FPWR\, are hosting a free\, live webinar featuring expert speakers\, real-life caregiver experiences\, and important information about VYKAT XR. \nWhat You’ll Learn\n– How to recognize hyperphagia in people living with PWS\n– How VYKAT XR works to manage hyperphagia\n– A caregiver’s personal experience with VYKAT XR\n– How to get started with VYKAT XR \nFeatured Speakers\n– Kathryn Obrynba\, MD – Nationwide Children’s Hospital\n– Deahl Wilson – Caring for a loved one with PWS\n– Stacy Ward – CEO\, Prader-Willi Syndrome Association | USA\n– Susan Hedstrom – Executive Director\, Foundation for Prader-Willi Research\n– Brennen Fields – Senior Director\, Patient Access Solutions\, Soleno Therapeutics \nVYKAT XR’s FDA approval on March 26\, 2025\, marks a significant step forward in addressing one of the most challenging symptoms of PWS. This webinar is your opportunity to gain valuable insights\, ask questions\, and hear directly from experts and caregivers about what this treatment means for individuals with PWS and their families. \nRegister Today!\nDon’t miss out – sign up now to secure your spot. If you are unable to attend the live session\, a recording will be available: REGISTER HERE \nYou can also download a flyer at the button below and share it with your community to help spread the word: DOWNLOAD HERE
URL:https://www.pwsausa.org/event/free-live-webinar-understanding-vykat-xr-the-first-fda-approved-treatment-for-hyperphagia-in-pws/
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