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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:20251018T183000
DTEND;TZID=America/New_York:20251018T183000
DTSTAMP:20260414T120857
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
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/05/cocktails-for-a-cause-logo2-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251011T153000
DTEND;TZID=America/New_York:20251011T153000
DTSTAMP:20260414T120857
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:20260414T120857
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:20260414T120857
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
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/04/2025-Hunter-Lens-Golf-Tournament-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250906T123000
DTEND;TZID=America/New_York:20250906T170000
DTSTAMP:20260414T120857
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
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/06/event-4th-annual-no-gimmes-for-jimmy-charity-golf-outing-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250819T200000
DTEND;TZID=America/New_York:20250819T210000
DTSTAMP:20260414T120857
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/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/07/Harmony-Webinar-1-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250624
DTEND;VALUE=DATE:20250629
DTSTAMP:20260414T120857
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/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/03/Tuesday-March-26-2024-5pm-PST-8pm-EST-4.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250604T120000
DTEND;TZID=America/New_York:20250604T130000
DTSTAMP:20260414T120857
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/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/05/countdown-to-conference-24-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250520T200000
DTEND;TZID=America/New_York:20250520T210000
DTSTAMP:20260414T120857
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/
LOCATION:MO
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2025/05/Image20250513142751-jpg.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250515T110000
DTEND;TZID=America/New_York:20250515T230000
DTSTAMP:20260414T120857
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/
LOCATION:MO
CATEGORIES:Pennsylvania
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/05/PWS-awareness-day-restaurant-fundraisers-PA-1-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250515T000000
DTEND;TZID=America/New_York:20250530T000000
DTSTAMP:20260414T120857
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/
LOCATION:MO
CATEGORIES:Louisiana
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/05/PWS-awareness-day-restaurant-fundraisers-PA-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250514T120000
DTEND;TZID=America/New_York:20250514T130000
DTSTAMP:20260414T120857
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/
LOCATION:MO
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2025/04/Image20250411115147-jpg.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250503T090000
DTEND;TZID=America/New_York:20250503T090000
DTSTAMP:20260414T120857
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
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/01/NC-5K-Hope-United-1280-x-720-px.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250501
DTEND;VALUE=DATE:20250601
DTSTAMP:20260414T120857
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/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/03/PWS-Awareness-Month-Graphics-3-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250501
DTEND;VALUE=DATE:20250601
DTSTAMP:20260414T120857
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/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/03/PWS-Awareness-Month-Graphics-2-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250426T120000
DTEND;TZID=America/New_York:20250426T133000
DTSTAMP:20260414T120857
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/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/03/Countdown-to-Conference-Email-Graphics-18-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250422T210000
DTEND;TZID=America/New_York:20250422T220000
DTSTAMP:20260414T120857
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/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/04/PWS-Community-Town-Hall-1200x630-1-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250416T121500
DTEND;TZID=America/New_York:20250416T121500
DTSTAMP:20260414T120857
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/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/03/Solenos-Heartfelt-Thanks-to-the-Prader-Willi-Syndrome-Community-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250405T180000
DTEND;TZID=America/New_York:20250405T180000
DTSTAMP:20260414T120857
CREATED:20250102T163934Z
LAST-MODIFIED:20250305T152026Z
UID:55667-1743876000-1743876000@www.pwsausa.org
SUMMARY:Zahra's Night of Light
DESCRIPTION:When: Saturday\, April 5\, 2025 | 6:00 PM\nWhere: Historical Hall (608 Old Post Road\, Bedford NY)\nCLICK HERE TO REGISTER AND BECOME AN EVENT SPONSOR \nJoin us for the inaugural Zahra’s Night of Light at the Historic Hall in Bedford\, NY! This community event brings us together to support children like Zahra\, living with Prader-Willi Syndrome. Enjoy an evening filled with entertainment\, food and drinks\, a silent auction\, and more. \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 Zahra\, this syndrome is just one part of who she is\, but it significantly impacts her and our family’s world\, now and forever. \nThere’s no cure or treatments\, but with your support\, we can give her—and others—a chance at independence and freedom from hunger. \nJoin us on April 5th for an unforgettable evening of hope and impact!
URL:https://www.pwsausa.org/event/zahras-night-of-light/
LOCATION:Historical Hall\, 608 Old Post Rd\, Bedford\, NY\, 10506\, United States
CATEGORIES:New York
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/01/PWS-Event-Zahras-Night-of-Light.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250322T170000
DTEND;TZID=America/New_York:20250322T213000
DTSTAMP:20260414T120857
CREATED:20241226T152017Z
LAST-MODIFIED:20241226T152017Z
UID:55588-1742662800-1742679000@www.pwsausa.org
SUMMARY:2025 Clint Hurdle Hot Stove Dinner
DESCRIPTION:Sip\, Savor\, Support!\nJoin Clint and Karla Hurdle on Saturday\, March 22\, 2025\, to support PWSA | USA. \nEnjoy the 11th Annual Hot Stove Dinner at this outdoor event on the beautiful grounds of Bradenton Country Club\, Bradenton\, FL\, or virtually from anywhere. \nREGISTER HERE! \nEvent Schedule: \n5:00 PM EST – 6:00 PM EST | Island Treasure Reception (Guests registered for this limited attendance event may arrive at 4:45 PM EST) \nVirtual Event – 5:00 PM EST – 8:30 PM EST | All virtual guests will be sent a virtual event link on Wednesday\, March 19\, 2025. Please email Penny@ElevareFoundation.org in the event you do not receive your email by Thursday\, March 20\, 2025. Please check your spam folder as well. \nMain Event (General Admission) – 6:00 PM EST – 9:30 PM EST \nHighlights of the evening: \n\nInspirational stories of what Prader-Willi Syndrome Association | USA does every day!\nSilent Auction: Bid on exclusive items and experiences\, with all proceeds going towards PWS research and support programs\nGourmet Dinner: Enjoy a delectable meal while mingling with fellow supporters and advocates\nLive Entertainment\nRaffle\nCoconut Drop | Golf Ball Drop!
URL:https://www.pwsausa.org/event/2025-clint-hurdle-hot-stove-dinner/
LOCATION:Bradenton Country Club\, 4646 9th Ave W\, Bradenton\, Florida\, 34209
CATEGORIES:Florida
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/12/Hot-Stove-Dinner-2025-Save-the-Date.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250311T200000
DTEND;TZID=America/New_York:20250311T210000
DTSTAMP:20260414T120857
CREATED:20250307T150831Z
LAST-MODIFIED:20250307T150831Z
UID:57354-1741723200-1741726800@www.pwsausa.org
SUMMARY:Harmony Biosciences Webinar Opportunity
DESCRIPTION:We invite the PWS community to join us for a FREE and important webinar with Harmony Biosciences on Tuesday\, March 11\, 2025\, at 5:00 PM PST / 8:00 PM EST on Zoom! \nCLICK HERE TO REGISTER \nThis is your chance to: – Learn about the TEMPO Phase 3 clinical trial of pitolisant\, a potential treatment for excessive daytime sleepiness (EDS) and behavioral disturbances in PWS.\n– Find out where trial sites are located (ALL sites are now open and actively enrolling participants).– Ask your questions directly to the Harmony Biosciences 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. \nDon’t miss this opportunity to be part of the future of PWS treatment! Click the button below to register. \nMark your calendar and spread the word!
URL:https://www.pwsausa.org/event/harmony-biosciences-webinar-opportunity/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/03/Countdown-to-Conference-Email-Graphics-2-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250228T000000
DTEND;TZID=America/New_York:20250228T000000
DTSTAMP:20260414T120857
CREATED:20250212T223344Z
LAST-MODIFIED:20250212T223344Z
UID:56538-1740700800-1740700800@www.pwsausa.org
SUMMARY:Rare Disease Day 2025
DESCRIPTION:Rare but strong. Rare but resilient. Rare but never alone. \nThis Rare Disease Day (Friday\, February 28\, 2025)\, we’re standing with the Prader-Willi syndrome community and the 30 million Americans living with a rare disease. Whether you’re sharing your story\, spreading awareness\, or fundraising for a brighter future\, YOU can make a difference. \n\nDownload our “Media” and “15 Ways to Raise Awareness” toolkits with exclusive PWS-specific social media graphics\, advocacy tips\, and creative ways to get involved.\nLearn why Rare Disease Day matters and how Prader-Willi syndrome compares to other rare conditions.\nFind out why zebras are the official symbol of the rare disease community—and how you can show your stripes!\nSupport PWSA | USA to ensure families impacted by PWS have a strong\, united voice for the next 50 years.\n\nCLICK HERE TO EXPLORE OUR RARE DISEASE DAY HUB
URL:https://www.pwsausa.org/event/rare-disease-day-2025/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/02/Harmony-Biosciences-Logo-3-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250201T173000
DTEND;TZID=America/New_York:20250201T173000
DTSTAMP:20260414T120857
CREATED:20250102T163351Z
LAST-MODIFIED:20250102T164017Z
UID:55663-1738431000-1738431000@www.pwsausa.org
SUMMARY:Diamonds & Denim 2025
DESCRIPTION:When: Saturday\, February 1\, 2025 | 5:30 pm\n\n\nWhere: Poe’s on the Hill\, Springfield\, IL\n\nCLICK HERE TO PURCHASE TICKETS \nJoin Team Esme for an Unforgettable Evening of Fun and Fundraising! \nGet ready for a night of delicious food\, lively dancing\, and exciting entertainment. DJ Chad Burton will keep the energy high throughout the evening. Explore our silent auction items\, available for browsing and bidding all night\, and don’t miss the live auction kicking off at 8 PM! \nDress to impress in your best “diamonds” or keep it relaxed in “denim”—either way\, you’re in for a fantastic time. \nEvent Details: \n\nTickets: $60 per person | $110 per couple\nDinner Options: Prime Rib or Cavatappi with Alfredo Chicken\nIncludes a decadent dessert buffet!\nDoors Open: 5 PM\n\nBring some cash for 50/50 draws\, raffles\, and other fun games. Mark your calendar and join us for an evening you won’t want to miss! \n\n\nWe’re raising funds for Prader-Willi Syndrome (PWS) research\, advocacy and family support\, inspired by Esme—our beautiful\, loving 6-year-old whose resilience shines despite countless challenges. \nPWS is a rare genetic condition that begins with low muscle tone\, feeding difficulties\, and delayed development in infancy. By childhood\, it evolves into a relentless hunger that dominates daily life. For Esme\, this syndrome is just one part of who she is\, but it significantly impacts her and our family’s world. \nWhile we cherish dreams for Esme’s future\, we also face fears of the insatiable appetite PWS brings. There’s no cure yet\, but with your support\, we can fund the research\, advocacy\, and family support resources to give her—and others—a chance at independence and freedom from hunger. \nJoin us on February 1st for an unforgettable evening of hope and impact!
URL:https://www.pwsausa.org/event/diamonds-denim-2025/
LOCATION:Poe’s on the Hill\, 295 E Andrew Rd\, Springfield\, IL\, 62707\, United States
CATEGORIES:Illinois
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/01/PWS-Event-Diamonds-and-Denim.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241119T200000
DTEND;TZID=America/New_York:20241119T210000
DTSTAMP:20260414T120857
CREATED:20241119T145711Z
LAST-MODIFIED:20241119T145722Z
UID:55218-1732046400-1732050000@www.pwsausa.org
SUMMARY:Family Support Webinar: Babysitter and Care Provider Training
DESCRIPTION:CLICK HERE TO REGISTER \nWhen: Tuesday\, November 19\, 2024 | 5 pm PST / 8 pm EST \nThis live webinar\, facilitated by Lisa Graziano\, M.A. LMFT\, will help your babysitter\, respite worker\, and even relatives better understand how to care for your child or adult more safely\, giving YOU greater opportunity to enjoy date nights\, self-care moments\, and even weekends away! The webinar underscores the need to follow parents care exactly and offers strategies to provide food security\, decrease arguing\, and increase cooperation.
URL:https://www.pwsausa.org/event/family-support-webinar-babysitter-and-care-provider-training/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/11/FS-Webinar-IG.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241111T170000
DTEND;TZID=America/New_York:20241111T180000
DTSTAMP:20260414T120857
CREATED:20240701T204003Z
LAST-MODIFIED:20241015T141911Z
UID:51990-1731344400-1731348000@www.pwsausa.org
SUMMARY:ECHO 4 PWS Webinar: Exercise Physiology
DESCRIPTION:Join PWSA | USA for our November ECHO 4 PWS Webinar\, Exercise Physiology with Dr. Daniela Rubin.  More details coming soon! \nREGISTER IN ADVANCE HERE \nPWSA | USA launched our Health Care Provider Project ECHO Series\, ECHO 4 PWS\, in 2023. We are proud to offer this opportunity to health care professionals who work with patients affected by Prader-Willi syndrome (PWS) and to be the first PWS organization to implement Project ECHO® in the United States.
URL:https://www.pwsausa.org/event/echo-4-pws-webinar-exercise-physiology/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/07/ECHO-4-PWS-graphic-feeding-4.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241101
DTEND;VALUE=DATE:20250101
DTSTAMP:20260414T120857
CREATED:20241027T231926Z
LAST-MODIFIED:20241027T231926Z
UID:54880-1730419200-1735689599@www.pwsausa.org
SUMMARY:2024 Angel Drive Campaign - Give the Gift of Hope
DESCRIPTION:CLICK HERE TO MAKE YOUR GIFT OF HOPE! \nAs we approach the end of 2024\, we are filled with gratitude for your unwavering support. This year has been a time of innovation and growth for the Prader-Willi Syndrome Association | USA (PWSA | USA)\, and it’s all thanks to your engagement and generosity \n\n\n\n\n\nSharing and Celebrating Our 2024 Achievements\n\n\n\n\n\nOur 2024 D.C. Fly-In saw 150 advocates participate in over 130 congressional meetings\, resulting in a letter of support for PWS signed by 27 elected officials.\nThe voice of individuals with PWS was amplified by the community’s historic Voice of the Patient Report and PWS Advocacy Coalition Petition to the FDA\, advocating for Soleno Therapeutics’ DCCR new drug application and future treatments\, AND the re-launch of our Adults-with-PWS Advisory Board.\nWe helped over 50 teens and adults living with PWS develop essential communication skills to better navigate relationships through our BOSS Program.\nWe launched the PWS United Podcast to share resources and stories\, fostering community connection. Our first-ever Residential Providers Conference brought together over 100 providers to improve care for individuals with PWS.\n\n\n\n\n\n\n\nLooking Ahead to 2025: Celebrating 50 Years of Impact\n\n\n\n\nAs we approach our 50th anniversary in 2025\, we reflect on our progress and renew our commitment to the PWS community. To advance this important work\, we need your support. \n\n\n\n\n\n\nJoin Our 2024 Angel Drive\n\n\n\n\nMake a gift to the 2024 Angel Drive before December 15th\, and you’ll be entered to win one of four fantastic prizes: an Apple Smart Watch\, a $300 Amazon Gift Card\, Custom Nike PWS Sneakers\, or a PWSA Swag Bag! \n\n\n\n\n\nBy giving your gift of HOPE\, you’ll help us remain a lifeline\, ensuring families can access vital resources\, from critical support services to advancing research\, advocacy\, and awareness. Your tax-deductible gift guarantees that PWSA | USA can continue providing hope\, 24/7/365. Thank you for being part of this journey and for your unwavering commitment to the PWS community.
URL:https://www.pwsausa.org/event/2024-angel-drive-campaign-give-the-gift-of-hope/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/10/2024-Angel-Drive-Event-Graphic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241024T120000
DTEND;TZID=America/New_York:20241024T130000
DTSTAMP:20260414T120857
CREATED:20240725T190951Z
LAST-MODIFIED:20241015T141524Z
UID:52642-1729771200-1729774800@www.pwsausa.org
SUMMARY:ECHO 4 PWS Webinar: Psychiatry and PWS with Dr. Deepan Singh
DESCRIPTION:Join PWSA | USA for our October ECHO 4 PWS Webinar\, Psychiatry and PWS with Deepan Singh\, MD\, on October 24\, 2024\, at 12:00 p.m. EST. More details coming soon! \nREGISTER IN ADVANCE HERE \nPWSA | USA launched our Health Care Provider Project ECHO Series\, ECHO 4 PWS\, in 2023. We are proud to offer this opportunity to health care professionals who work with patients affected by Prader-Willi syndrome (PWS) and to be the first PWS organization to implement Project ECHO® in the United States. \n 
URL:https://www.pwsausa.org/event/echo-4-pws-webinar-psychiatry-and-pws-with-dr-deepan-singh/
LOCATION:MO
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/07/Military-family-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241012T190000
DTEND;TZID=America/New_York:20241012T190000
DTSTAMP:20260414T120857
CREATED:20240627T205140Z
LAST-MODIFIED:20241003T133242Z
UID:51935-1728759600-1728759600@www.pwsausa.org
SUMMARY:4th Annual Answers for Audrey Trivia Night
DESCRIPTION:Hosted by PWS Mom Michelle Spring \nPlease join us at the 4th Annual (Trivia) Answers for Audrey event on Saturday\, October 12th\, 2024 at the Incarnate Word Academy (2788 Normandy Dr\, Bel-Nor\, MO\, United States\, Missouri)! Doors open at 6:30 pm and trivia starts at 7:00 pm. \nOur daughter\, Audrey Rose\, was diagnosed with Prader-Willi Syndrome on December 19\, 2020. \nPrader-Willi Syndrome is a genetic disorder that affects a critical region of chromosome 15. PWS affects 1 in 15\,000 births. With the spectrum syndrome\, there is a risk of abnormal growth and body composition\, insatiable hunger\, obesity\, and intellectual disability. We do not know how and to what extent PWS symptoms will affect Auddie but we do know we want to help find treatments. Proceeds raised will be divided between the Spring Family medical needs and PWSA | USA\, a foundation that helped us in our darkest days and that is on the cutting edge of research\, medical trials\, and life-changing treatments. \nWe cannot thank you enough for your interest in our fundraising event! \nPlease contact Michelle or Michael with any interest or questions:\nEmail: AnswersForAudrey@gmail.com Phone : 636-634-5601 \nPlease note\, any donation made via the online platform is tax deductible. Donations made the night of the event will benefit the Spring Family directly and therefore are not tax deductible. Due to the nature of this event\, no refunds will be granted. \nREGISTER FOR THIS EVENT BY CLICKING HERE.
URL:https://www.pwsausa.org/event/4th-annual-answers-for-audrey-trivia-night/
LOCATION:Incarnate Word Academy\, 2788 Normandy Ave.\, St. Louis\, MO\, 63121\, United States
CATEGORIES:Missouri
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/06/Save-The-Date-Trivia-Night-Aud-Pic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241012T170000
DTEND;TZID=America/New_York:20241012T170000
DTSTAMP:20260414T120857
CREATED:20240509T184251Z
LAST-MODIFIED:20241003T133124Z
UID:51241-1728752400-1728752400@www.pwsausa.org
SUMMARY:Dance Silly for Prader-Willi
DESCRIPTION:Hosted by PWS Mom Michele Hampton \nJoin us for the inaugural 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\nReceive a special kids’ basket for all registered families\nParticipate in kids and adult raffles for fabulous prizes\nSavor delicious dinner and snacks\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/dance-silly-for-prader-willi/
LOCATION:Trumbull Career & Technical Center\, 528 Educational Hwy NW\, Warren\, OH\, 44483\, United States
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/05/dance-silly-poster_Melanie-McDonald.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241011T090000
DTEND;TZID=America/New_York:20241011T090000
DTSTAMP:20260414T120857
CREATED:20240605T205936Z
LAST-MODIFIED:20241003T132600Z
UID:51681-1728637200-1728637200@www.pwsausa.org
SUMMARY:No Gimmes for Jimmy Golf Tournament
DESCRIPTION:Join us for a day on the links on Friday\, October 11\, 2024\, at Rock Spring Golf Club in West Orange\, NJ in remembrance of Jim Worthington. A portion of the proceeds will be donated to the PWSA\, in Jim’s name. This event is inclusive for golfers and non-golfers alike – all skill levels are welcome. \nAbout the Event\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. \nSo\, 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.
URL:https://www.pwsausa.org/event/no-gimmes-for-jimmy-golf-tournament/
LOCATION:Rock Spring Golf Club\, 90 Rock Spring Rd\, West Orange\, NJ\, 07052\, United States
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/06/Hunter-Lens-Golf-Tournament-2024-1.png
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