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X-WR-CALDESC:Events for Prader-Willi Syndrome Association | USA
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DTSTART;TZID=America/New_York:20241111T170000
DTEND;TZID=America/New_York:20241111T180000
DTSTAMP:20260418T063605
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/
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:20260418T063605
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/
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:20260418T063605
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/
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:20260418T063605
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:20260418T063605
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241011T090000
DTEND;TZID=America/New_York:20241011T090000
DTSTAMP:20260418T063605
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241005T120000
DTEND;TZID=America/New_York:20241005T120000
DTSTAMP:20260418T063605
CREATED:20240605T205522Z
LAST-MODIFIED:20241003T132634Z
UID:51678-1728129600-1728129600@www.pwsausa.org
SUMMARY:15th Annual Hunter Lens Golf Tournament
DESCRIPTION:Calling all New Englanders – Join the Lens family for a full afternoon of fun activities! \nThe 15th Annual Hunter Lens Golf Tournament will take place Saturday\, October 5\, 2024\, at 12:00 p.m. EST at the Back Nine Club (17 Heritage Hill Dr.\, Lakeville\, MA 02347). \nEnjoy time with family and friends while participating in golf\, a silent auction\, prize drawings\, and delicious dinner. Meet Hunter (26\, living with PWS)\, learn more about PWS and how PWSA | USA is working to help families across the U.S\, and enjoy a day on a beautiful course with great company! Register TODAY by visiting the Hunter Lens Golf Tournament registration page – CLICK HERE.
URL:https://www.pwsausa.org/event/15th-annual-hunter-lens-golf-tournament/
LOCATION:The Back Nine Club\, 17 Heritage Hill\, Lakeville\, MA\, 02347\, United States
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/06/Hunter-Lens-Golf-Tournament-2024.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240930T083000
DTEND;TZID=America/New_York:20240930T200000
DTSTAMP:20260418T063605
CREATED:20240712T151824Z
LAST-MODIFIED:20240712T151824Z
UID:52361-1727685000-1727726400@www.pwsausa.org
SUMMARY:The Inaugural RMC Foundation Golf Outing
DESCRIPTION:Tee off for a great cause at RMC’s annual golf tournament\, benefiting innovative research and community support initiatives. Enjoy a round of golf while making a positive impact on those living with Prader-Willi Syndrome. \nWhen: Monday\, September 30\, 2024\n8:30 a.m. shotgun start\nWhere: Ritz-Carlton Members Golf Club\nBradenton\, FL \nRegister TODAY at https://www.thermcfoundation.org/golf2024. \nThe RMC Foundation works to provide funding to PWSA | USA’s Advocacy Programs. These Programs help enrich the lives of people living with Prader-Willi Syndrome.
URL:https://www.pwsausa.org/event/the-inaugural-rmc-foundation-golf-outing/
LOCATION:Ritz-Carlton Members Golf Club\, 15150 70th Terrace E\,\, Bradenton\, FL\, 34202\, United States
CATEGORIES:Florida
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/07/Screenshot-2024-07-12-110836.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240911T170000
DTEND;TZID=America/New_York:20240911T180000
DTSTAMP:20260418T063605
CREATED:20240701T203617Z
LAST-MODIFIED:20240731T202437Z
UID:51987-1726074000-1726077600@www.pwsausa.org
SUMMARY:ECHO 4 PWS Webinar: Feeding and Swallowing
DESCRIPTION:Join PWSA | USA for our September ECHO 4 PWS Webinar\, Feeding and Swallowing with Roxann Diez Gross\, PhD\, CCC/SLP\, and Ann Scheimann\, MD\, MBA. This presentation is designed to enhance the knowledge of the assessment and management of the clinical features of PWS and increase the clinical knowledge of the management of feeding /swallowing issues using care based learning through a multi disciplined approach. \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-feeding-and-swallowing/
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/07/ECHO-4-PWS-graphic-feeding.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240907T090000
DTEND;TZID=America/New_York:20240907T143000
DTSTAMP:20260418T063605
CREATED:20240719T140226Z
LAST-MODIFIED:20240731T203020Z
UID:52567-1725699600-1725719400@www.pwsausa.org
SUMMARY:1st Annual Gavin Gill Classic Golf Tournament: Driving for a Cure
DESCRIPTION:Calling all New Englanders:\nJoin the Gill Family for a full morning of fun activities! \nThe 1st Annual Gavin Gill Classic Golf Tournament – Driving for a Cure\, will take place on Saturday\, September 7\, 2024\, at 9:00 a.m. EST at North Hill Country Club (29 Merry Avenue\, Duxbury\, MA 02332). \nEnjoy time with family and friends while participating in golf\, a silent auction\, prize drawings\, and a delicious lunch. \nMeet Gavin (18\, living with PWS)\, learn more about PWS and how PWSA | USA is working to help families across the U.S.\, and enjoy a day on a beautiful golf course with great company! \nCLICK HERE TO REGISTER FOR AND/OR SPONSOR THE GAVIN GILL CLASSIC
URL:https://www.pwsausa.org/event/1st-annual-gavin-gill-classic-golf-tournament-driving-for-a-cure/
LOCATION:North Hill Country Club\, 29 Merry Avenue\, Duxbury\, MA\, 02332
CATEGORIES:Massachusetts
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/07/Gavin-Gill-Classic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240818
DTEND;VALUE=DATE:20240821
DTSTAMP:20260418T063605
CREATED:20240426T193108Z
LAST-MODIFIED:20240426T193108Z
UID:50690-1723939200-1724198399@www.pwsausa.org
SUMMARY:PWSA | USA's Residential Providers Conference
DESCRIPTION:As residential providers and caregivers are integral to the health and well-being of those living with PWS\, it is critical they have access to the latest information. PWSA | USA’s 2024 Residential Providers Conference\, Empowerment Heroes: Reveal Your Superpowers\, will offer a variety of lectures and workshops in a collaborative space where professionals can exchange practice-driven knowledge and actively contribute their experiences. The conference will take place August 18-20\, 2024\, both virtually via ZOOM and in-person at the Kimpton Brice Hotel in Savannah\, GA. The goal of this event is to enhance the care provided to individuals and develop new methods of support on a range of topics like research\, relationships\, technology\, the role of therapies\, diagnostic instruments in behavior management\, autonomy\, aging\, and more. Whether you have daily or occasional involvement as a professional caregiver of people with PWS\, we invite you to join! \nCLICK HERE TO LEARN MORE AND REGISTER
URL:https://www.pwsausa.org/event/pwsa-usas-residential-providers-conference/
LOCATION:Kimpton Brice Hotel\, 601 E Bay St\, Savannah\, GA\, 31401\, United States
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/04/Residential-Providers-Conference-Save-the-Date-graphic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240815T170000
DTEND;TZID=America/New_York:20240815T180000
DTSTAMP:20260418T063605
CREATED:20240701T203321Z
LAST-MODIFIED:20240731T202545Z
UID:51983-1723741200-1723744800@www.pwsausa.org
SUMMARY:ECHO 4 PWS Webinar: Cardiac Concerns
DESCRIPTION:Join PWSA | USA for our August ECHO 4 PWS Webinar\, Cardiac Concerns with Dr. James Loker. On August 15\, 2024\, at 5:00 p.m. EST\, Dr. Loker will discuss Cardiac disease\, which accounts for 16% of all deaths in PWS. He will share the unique features of PWS that may predispose them to cardiovascular problems. \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-cardiac-with-dr-james-loker/
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/07/ECHO-4-PWS-graphic-feeding-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240806T200000
DTEND;TZID=America/New_York:20240806T210000
DTSTAMP:20260418T063605
CREATED:20240702T155952Z
LAST-MODIFIED:20240702T155952Z
UID:52038-1722974400-1722978000@www.pwsausa.org
SUMMARY:PWS - Aging and Health Update Webinar Part 2
DESCRIPTION:REGISTER IN ADVANCE HERE \nPresenters: Barb Dorn\, RN BSN\, PWSA l USA Volunteer \nOverview:  This webinar will continue discussion on commonly reported health issues by sharing risk factors\, screening and monitoring tools as well as prevention and management strategies for additional health topics – respiratory issues\, weight gain/obesity\, low bone density\, cardiac issues (high BP\, elevated lipids\, swelling)\, mobility issues / spine deformities and worsening mental health (depression\, low energy and dementia). \nDate: Tuesday\, August 6\, 2024 \nTime: 7:00 pm CST / 8:00 pm EST \nObjectives: Attendees will be able to: \n\nShare risk factors\, screening and monitoring tools and prevention and management strategies for additional commonly reported health issues seen in aging adults with PWS.\nTopics to be covered:\n\nRespiratory Issues\nWeight Gain/obesity\nLow Bone Density\,\nCardiac Issues (high BP\, high lipids\, swelling)\nMobility issues / spine deformities\nWorsening mental health issues (depression\, low energy and dementia).
URL:https://www.pwsausa.org/event/pws-aging-and-health-update-webinar-part-2/
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/07/PWS-Aging-Webinar-Series.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240730T200000
DTEND;TZID=America/New_York:20240730T210000
DTSTAMP:20260418T063605
CREATED:20240702T155754Z
LAST-MODIFIED:20240702T155754Z
UID:52035-1722369600-1722373200@www.pwsausa.org
SUMMARY:PWS - Aging Research and Health Update Webinar Part I
DESCRIPTION:REGISTER IN ADVANCE HERE \nPresenters: Lynn Garrick\, RN\, MSN\, PWSA l USA Medical and Research Coordinator\, Barb Dorn\, RN BSN\, PWSA l USA Volunteer \nOverview:  This webinar will highlight current research in the area of aging and PWS.  It will also identify the most common health issues being reported by parents\, guardians and caregivers.  The speakers will then begin sharing risk factors\, screening and monitoring tools as well as prevention and management strategies for three of the most commonly reported health issues – dental issues\, choking /constipation\, and diabetes. \nDate: Tuesday\, July 30\, 2024 \nTime: 7 pm CST / 8 pm EST \nObjectives: Attendees will be able to: \n\nHighlight some of the current research in the area of aging and PWS\nShare results of Aging and Health Survey (Barb)\n\nIdentify most common health issues reported by parents\, guardians and caregivers.\n\n\nShare risk factors\, screening / monitoring tools and prevention / management strategies for 5 of the most commonly reported health issues.\nTopics to be covered:\n\nDental Concerns\nChoking\nGastroparesis\nConstipation\nDiabetes
URL:https://www.pwsausa.org/event/pws-aging-research-and-health-update-webinar-part-i/
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/07/PWS-Aging-Webinar-Series.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240513
DTEND;VALUE=DATE:20240516
DTSTAMP:20260418T063605
CREATED:20231030T180144Z
LAST-MODIFIED:20240412T154755Z
UID:45618-1715558400-1715817599@www.pwsausa.org
SUMMARY:2024 D.C. Fly-In
DESCRIPTION:150 PWS Advocates will descend on Capitol Hill during National PWS Awareness Day for PWSA | USA’s 2nd D.C. Fly-In!\nPWSA | USA is excited to announce that our 2nd D.C. Fly-In will take place May 13-15\, 2024\, and the event hotel will be YOTEL Washington DC | Capitol Hill Hotel (415 New Jersey Ave NW\, Washington\, DC 20001)! During the Fly-In\, we will learn about Policy affecting the PWS community\, hear from policy makers\, and continue our advocacy efforts by coming together on May 15th for a “Day on the Hill” to celebrate National PWS Awareness Day! We want to thank Aardvark Therapeutics\, Acadia Pharmaceuticals\, Harmony Biosciences\, and Soleno Therapeutics for funding this important event for our community. \nWe have reached our capacity for 2024 D.C. Fly-In applications. We are thrilled to see the overwhelming interest in this event and look forward to taking our advocacy efforts to Washington\, D.C. in May! Attendee selections have been made on a first-come\, first-served basis. Thank you all for your incredible enthusiasm and understanding! \nIf you have any questions\, please reach out to us at advocacy@pwsausa.org.
URL:https://www.pwsausa.org/event/2024-d-c-fly-in/
LOCATION:Washington\, D.C.
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2024/01/email-announcement.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240420T110000
DTEND;TZID=America/New_York:20240420T140000
DTSTAMP:20260418T063605
CREATED:20240308T204026Z
LAST-MODIFIED:20240315T211204Z
UID:49222-1713610800-1713621600@www.pwsausa.org
SUMMARY:Ohio 5K & Family Fun Run
DESCRIPTION:When: Saturday\, April 20\, 2024 from 11:00am – 2:00pm EST\nWhere: Glacier Ridge Metro Park\, 9801 Hyland-Croy Rd\, Plain City\, Ohio 43064 \nRegister to ATTEND or SPONSOR the Hope United Ohio 5K & Family Fun Run in support of Prader-Willi kids like us! Proceeds from this event will benefit PWSA | USA’s Advocacy\, Family Support\, and Research programs. \nCLICK HERE TO REGISTER! \nThe Hope United Ohio 5K & Family Fun Run will include: \n\nFood\nVendors\nA 5K Run/Walk\nKids games\nKids’ run\nAnd more!\n\nIf you’re interested in participating in this event or sponsoring this event\, please complete the registration form below. We hope to see you there! \nWould you like to help other Ohio PWS families fundraise? Create your own event page HERE.
URL:https://www.pwsausa.org/event/ohio-5k-family-fun-run/
CATEGORIES:Ohio
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240326T200000
DTEND;TZID=America/New_York:20240326T210000
DTSTAMP:20260418T063605
CREATED:20240305T153724Z
LAST-MODIFIED:20240305T153724Z
UID:49013-1711483200-1711486800@www.pwsausa.org
SUMMARY:Family Support Webinar: Psychosis in PWS - Early Signs\, Diagnosis\, and Treatment
DESCRIPTION:Join PWSA | USA and Elizabeth Roof\, MA\, HSP\, on Tuesday\, March 26th to learn more about Psychosis in PWS: Early Signs\, Diagnosis\, and Treatment. The webinar will begin at 5pm PST/ 8pm EST. Elizabeth Roof is a Senior Research Associate at Vanderbilt University Department of Psychology and has been licensed as a Health Service Provider in Tennessee since 1994. She currently directs several research programs with children and adults with Prader-Willi syndrome alongside Elisabeth Dykens. For over 30 years\, Elizabeth has followed longitudinally over 400 children\, teens\, and adults with PWS in research studies. She has a wealth of knowledge and experience with PWS and has valuable insights to offer in the realm of psychosis in PWS. Register for the webinar below. \nCLICK HERE TO REGISTER
URL:https://www.pwsausa.org/event/family-support-webinar-psychosis-in-pws-early-signs-diagnosis-and-treatment/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240323T180000
DTEND;TZID=America/New_York:20240323T230000
DTSTAMP:20260418T063605
CREATED:20240122T150633Z
LAST-MODIFIED:20240122T150633Z
UID:47354-1711216800-1711234800@www.pwsausa.org
SUMMARY:2024 Clint Hurdle Hot Stove Dinner
DESCRIPTION:2024 Clint Hurdle Hot Stove Dinner Tickets Now Available for Purchase!\nJoin hosts Clint and Karla Hurdle on Saturday\, March 23\, 2024\, on the beautiful grounds of Bradenton Country Club (4646 9th Ave W\, Bradenton\, FL 34209) in Bradenton\, FL\, and virtually from anywhere. Together\, we can create a brighter future through your continued support! \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!\n\nTo purchase tickets\, text the keyword Hotstove2024 to 76278 or go to hotstove2024.givesmart.com
URL:https://www.pwsausa.org/event/2024-clint-hurdle-hot-stove-dinner/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240312T200000
DTEND;TZID=America/New_York:20240312T210000
DTSTAMP:20260418T063605
CREATED:20240305T152701Z
LAST-MODIFIED:20240305T152701Z
UID:49011-1710273600-1710277200@www.pwsausa.org
SUMMARY:Harmony Biosciences TEMPO Study Webinar
DESCRIPTION:Join PWSA | USA and the team from Harmony Biosciences on Tuesday\, March 12th at 8:00 p.m. EST / 5:00 p.m. PST to learn more about the upcoming Phase 3 registrational TEMPO study\, a randomized\, double-blind\, placebo-controlled\, multicenter\, global clinical study that will further assess the safety and efficacy of pitolisant in patients with PWS\, ages ≥ 6 years. This study is expected to be initiated in Q1 2024! \nCLICK HERE TO REGISTER
URL:https://www.pwsausa.org/event/harmony-biosciences-tempo-study-webinar/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240201
DTEND;VALUE=DATE:20240316
DTSTAMP:20260418T063605
CREATED:20240124T201441Z
LAST-MODIFIED:20240124T201643Z
UID:47445-1706745600-1710547199@www.pwsausa.org
SUMMARY:PWS Rare Aware Art Share: Theme 1 Submissions
DESCRIPTION:Between February 1 – March 15\, 2024\, we are collecting artwork for Theme 1\, PWS Awareness. Create your artwork using the prompt:\n\n\n\n\n“What is your superpower? What are you capable of?”\n\n\n\n\nPeople with Prader-Willi syndrome are capable of so many wonderful things. We want to know what you\, the artist\, are most proud of. What skill or talent do you have? Perhaps there are times when you feel that what you are capable of gets overshadowed by your diagnosis of PWS. We are offering you this space to share with us and the world what people need and should know about you and your talents. Think of something that you are good at\, something that was difficult for you to learn but you learned it anyway\, something that brings you joy or feelings of accomplishment. What can you do that makes you feel happy and proud? Once you have completed your art piece\, please submit a digital image of your artwork using the form below. \nCLICK HERE TO SUBMIT YOUR ARTWORK\nDisclaimer: We will only accept Rare Aware Art Share artwork submissions from those living with Prader-Willi syndrome
URL:https://www.pwsausa.org/event/pws-rare-aware-art-share-theme-1-submissions/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240116
DTEND;VALUE=DATE:20240319
DTSTAMP:20260418T063605
CREATED:20240117T212915Z
LAST-MODIFIED:20240117T212915Z
UID:47287-1705363200-1710806399@www.pwsausa.org
SUMMARY:2024 Walk a Mile in their Genes Advocacy Campaign
DESCRIPTION:We can continue to make our voices and our stories heard through advocacy and community outreach. Beginning January 16\, 2024\, YOU can sign up for PWSA | USA’s 2nd annual “Walk a Mile in their Genes” advocacy campaign. Participants will not only raise awareness about PWS\, but they will raise much needed funds to enable PWSA | USA to continue to provide the services our community needs. \nThis virtual/in-person fitness challenge is open to all ages and fitness levels to promote health and wellness\, while supporting the Prader-Willi syndrome community. \nTo learn more about this opportunity and how you can participate\, CLICK HERE.
URL:https://www.pwsausa.org/event/2024-walk-a-mile-in-their-genes-advocacy-campaign/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231101
DTEND;VALUE=DATE:20240101
DTSTAMP:20260418T063605
CREATED:20231030T180854Z
LAST-MODIFIED:20231030T180854Z
UID:45622-1698796800-1704067199@www.pwsausa.org
SUMMARY:Give the Gift of Hope: 2023 Angel Drive
DESCRIPTION:As children\, we always remember our favorite gifts bestowed at holiday times: a shiny red bike\, a beloved doll\, a new baseball glove. These gifts and the loved ones who gave them to us are forever etched in our memories now and always. \nAs the holiday season begins and the new year approaches\, PWSA | USA is grateful for your continued gifts of support and engagement. Together\, we work to tackle issues critical to our PWS community: \n\nPWSA | USA is helping to expand the knowledgebase of Health Care Providers through ECHO 4 PWS. We are proud to be the first PWS organization to implement Project ECHO® in the U.S.\nWe’re partnering with pharmaceutical companies and the FDA to help advance PWS clinical trials\, specifically for sleep-related issues and hyperphagia (insatiable hunger) treatments.\nIn June 2023\, PWSA | USA hosted the largest attended National Convention to date\, with nearly 1\,000 guests in attendance. In addition\, 350 people attended the historic FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD).\n60 of our volunteer advocates have participated in more than 150 meetings with elected officials to raise awareness and enact change. We are proud to say these efforts led a Congressional Resolution declaring May 15th as National PWS Awareness Day.\nOur Family Support team responded to 3\,447 requests for support.\nWe launched the Building Our Social Skills (BOSS) curriculum for teens and adults living with PWS.\n\nHelp be a positive force in our work and propel this momentum forward by Giving the Gift of HOPE to ensure we can continue TAKING ACTION in the new year! Whether it’s working with volunteer advocates to raise our voices with legislators in Washington\, D.C. about issues that matter most or helping you navigate the challenges associated with PWS\, your year-end\, tax-deductible gift ensures that PWSA | USA can continue to provide HOPE to families 24/7/365! \nCLICK HERE TO MAKE YOUR ANGEL DRIVE DONATION
URL:https://www.pwsausa.org/event/give-the-gift-of-hope-2023-angel-drive/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231026T100000
DTEND;TZID=America/New_York:20231026T110000
DTSTAMP:20260418T063605
CREATED:20231024T191411Z
LAST-MODIFIED:20240806T181024Z
UID:45415-1698314400-1698318000@www.pwsausa.org
SUMMARY:U.S. Senate Committee on Aging Press Conference
DESCRIPTION:U.S. Senate Committee Hearing Live Broadcast Link Now Available – CLICK HERE TO ACCESS\nThis Thursday\, PWSA | USA advocates will participate in a groundbreaking opportunity for the PWS community! On October 26\, 2023\, our advocates will be present for a press conference on Capitol Hill\, hosted by Senator Mike Braun (R-IN)\, Senator Kirsten Gillibrand (D-NY)\, Representative Mike Gallagher (R-WI)\, and Representative Mike Quigley (D-IL). The press event will give details about the Promising Pathway Act (PPA) and how rare diseases\, including PWS\, would benefit from its passage. \nThe Senate Committee on Aging will then hold a hearing titled Unlocking Hope: Access to Therapies for People with Rare\, Progressive\, and Serious Diseases. Our dedicated advocates will participate in the congressional hearing and raise awareness for PWS. \nSoleno Therapeutics has also announced the company’s CEO Anish Bhatnagar\, M.D.\, will provide a witness statement during the Senate committee hearing. According to their release\, “Both events (the press conference and hearing) will highlight the barriers to treatment faced by Americans with rare and progressive diseases. Anish Bhatnagar\, M.D.\, Chief Executive Officer of Soleno Therapeutics will act as a witness in the Senate hearing and share the regulatory challenges faced by the Prader-Willi Syndrome community\, and the broader rare disease community.” \nClick HERE to access the link to watch the Senate committee hearing LIVE on Thursday at 10:00AM EST! Ahead of the congressional hearing\, you are also encouraged to share your story with Congress to amplify our community’s voice. If you’re interested in participating\, click HERE to learn more. \nABOUT THE PROMISING PATHWAY ACT \nIntroduced by Senator Mike Braun (R-IN)\, Senator Kirsten Gillibrand (D-NY)\, Senator Lisa Murkowski (R-AK)\, Senator Kevin Cramer (R-ND) and Senator Roger Wicker (R-MS)\, this bill would expedite beneficial outcomes for patients by requiring the FDA to establish a rolling\, real-time\, priority review pathway for drugs intended to treat\, prevent\, or diagnose serious or life-threatening diseases or conditions. Learn more by clicking HERE.
URL:https://www.pwsausa.org/event/u-s-senate-committee-on-aging-press-conference/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231021T183000
DTEND;TZID=America/New_York:20231021T220000
DTSTAMP:20260418T063605
CREATED:20230807T193918Z
LAST-MODIFIED:20230807T193918Z
UID:44207-1697913000-1697925600@www.pwsausa.org
SUMMARY:3rd Annual Answers for Audrey
DESCRIPTION:What: (Trivia) Answers for Audrey\nWhere: Incarnate Word Academy\n2788 Normandy Avenue\nSt. Louis\, MO 63121 \nWhen: Saturday October 21\, 2023 \nCLICK HERE TO LEARN MORE
URL:https://www.pwsausa.org/event/3rd-annual-answers-for-audrey/
LOCATION:Incarnate Word Academy\, 2788 Normandy Ave.\, St. Louis\, MO\, 63121\, United States
CATEGORIES:Missouri
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231012
DTEND;VALUE=DATE:20231016
DTSTAMP:20260418T063605
CREATED:20230710T195532Z
LAST-MODIFIED:20230721T182221Z
UID:42927-1697068800-1697414399@www.pwsausa.org
SUMMARY:2023 Mom's Retreat
DESCRIPTION:When: October 12-15\, 2023 \nWhere: Palm Springs\, California \nPWSA | USA is excited to host our first-ever Mom’s Retreat in October 2023. We will welcome 30 PWS moms and full-time female caregivers to the Omni Rancho Las Palmas Resort & Spa in Palm Springs\, CA. The Moms’ Retreat application is now available and is due by August 14\, 2023. Mom’s Retreat attendees will be selected through a randomized lottery on August 18\, 2023. \nCLICK HERE TO LEARN MORE AND TO APPLY
URL:https://www.pwsausa.org/event/2023-moms-retreat/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231007T120000
DTEND;TZID=America/New_York:20231007T170000
DTSTAMP:20260418T063605
CREATED:20230807T194752Z
LAST-MODIFIED:20230807T194752Z
UID:44214-1696680000-1696698000@www.pwsausa.org
SUMMARY:14th Annual Hunter Lens Golf Tournament
DESCRIPTION:14TH ANNUAL HUNTER LENS GOLF TOURNAMENT\nOCTOBER 7\, 2023\nTHE BACK NINE CLUB\n17 HERITAGE HILL DR\, LAKEVILLE\, MA 02347\nAbout Hunter\nHunter is 24 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 research efforts. \nThe Event\nJoin us for a full afternoon of fun activities Saturday\, October 7th- golf\, a silent auction\, prize drawings\, and delicious dinner. Meet Hunter\, learn more about PWS and how PWSA | USA is working to help PWS families across the U.S\, and enjoy a day on a beautiful course with great friends! \nTo donate a silent auction item or to become an event sponsor\, contact John Lens at jlens@comcast.net to make arrangements.
URL:https://www.pwsausa.org/event/14th-annual-hunter-lens-golf-tournament/
LOCATION:The Back Nine Club\, 17 Heritage Hill\, Lakeville\, MA\, 02347\, United States
CATEGORIES:Massachusetts
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231006T080000
DTEND;TZID=America/New_York:20231006T170000
DTSTAMP:20260418T063605
CREATED:20230807T194419Z
LAST-MODIFIED:20230807T194419Z
UID:44210-1696579200-1696611600@www.pwsausa.org
SUMMARY:2nd Annual No Gimmies for Jimmy
DESCRIPTION:2ND ANNUAL NO GIMMES FOR JIMMY\nCHARITY GOLF OUTING\nOCTOBER 6\, 2023- 8AM CHECK-IN\, 9AM SHOT-GUN START\nNO GIMMES FOR JIMMY 2ND ANNUAL CHARITY GOLF OUTING IN LOVING MEMORY OF JIM WORTHINGTON A PWSA EVENT IN SUPPORT OF PRADER-WILLI SYNDROME JOIN US FOR A DAY ON THE LINKS IN REMEMBRANCE OF JIM WORTHINGTON. A PORTION OF THE PROCEEDS WILL BE DONATED TO THE PRADER-WILLI SYNDROME ASSOCIATION (“PWSA”)\, IN JIM’S NAME.\nTO REGISTER AS A GOLFER\, CLICK HERE: HTTPS://NOGIMMESFORJIMMY.RSVPIFY.COM/
URL:https://www.pwsausa.org/event/2nd-annual-no-gimmies-for-jimmy/
LOCATION:Rock Spring Golf Club\, 90 Rock Spring Rd\, West Orange\, NJ\, 07052\, United States
CATEGORIES:New Jersey
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230926T180000
DTEND;TZID=America/New_York:20230926T190000
DTSTAMP:20260418T063605
CREATED:20230920T161307Z
LAST-MODIFIED:20230920T161307Z
UID:44761-1695751200-1695754800@www.pwsausa.org
SUMMARY:ECHO 4 PWS - Endocrinology 101
DESCRIPTION:Register TODAY for PWSA | USA’s next Healthcare Provider Project ECHO Series webinar\, Endocrinology 101\, which will be held Tuesday\, September 26\, 2023 at 6:00 p.m. EST. We are proud to offer this FREE opportunity to healthcare professionals who work with patients affected by Prader-Willi syndrome (PWS) or are interested in learning more about PWS\, and to be the first PWS organization to implement Project ECHO in the United States. \nEndocrinology 101 will be presented by Jennifer Miller\, MD\, Professor of Pediatric Endocrinology\, Gainesville\, FL\, followed by a 20–minute case study on PWS presented by Moris Angulo\, MD\, Pediatrics\, Genetics\, and Pediatric Endocrinology\, Catholic Health Physician Partners. \nPWSA | USA’s Healthcare Provider Project ECHO Series will touch on a wide range of healthcare topics in the PWS space and will be available for all health professionals across our network including (but not limited to): Geneticists\, Pediatric Endocrinologists\, Neonatologists\, Nurses\, Pediatricians\, Endocrinologists\, Psychiatrists\, Psychologists\, Social Workers\, Occupational Therapists\, Physical Therapists\, Pulmonologists\, Orthopedic Surgeons\, Dieticians\, Physiotherapists\, Speech and Language Therapists\, Medical Students and Professional Caregivers. \nWhile this ECHO series is only for healthcare providers to attend\, recordings of the webinars will be made available for our PWS families on our website.
URL:https://www.pwsausa.org/event/echo-4-pws-endocrinology-101/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230809T200000
DTEND;TZID=America/New_York:20230809T210000
DTSTAMP:20260418T063605
CREATED:20230721T182412Z
LAST-MODIFIED:20230724T175707Z
UID:43535-1691611200-1691614800@www.pwsausa.org
SUMMARY:August Siblings Community Conversation
DESCRIPTION:Siblings of loved ones living with PWS are invited to join PWSA | USA for our next Siblings Community Conversation on August 9\, 2023\, at 8:00 p.m. EST. These sibling community conversation webinars will take place the 2nd Wednesday of every month. \nThis discussion provides a safe space for dialogue between siblings of a person with PWS. All ages are welcome to attend! PWSA | USA team members will also be available to offer any insight and support. \nIn an effort to ensure attendees feel comfortable to share openly\, this opportunity is just for siblings. We appreciate your understanding! \nCLICK HERE TO REGISTER IN ADVANCE
URL:https://www.pwsausa.org/event/august-siblings-community-conversation/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230712T140000
DTEND;TZID=America/New_York:20230712T150000
DTSTAMP:20260418T063605
CREATED:20230710T194900Z
LAST-MODIFIED:20230710T194900Z
UID:42924-1689170400-1689174000@www.pwsausa.org
SUMMARY:Siblings Community Conversation
DESCRIPTION:Siblings of loved ones living with PWS are invited to join PWSA | USA for our next Siblings Community Conversation on July 12\, 2023\, at 2:00 p.m. EST. These sibling community conversation webinars will take place the 2nd Wednesday of every month. \nThis discussion provides a safe space for dialogue between siblings of a person with PWS. All ages are welcome to attend! PWSA | USA team members will also be available to offer any insight and support. Register in advance at the button below. \nIn an effort to ensure attendees feel comfortable to share openly\, this opportunity is just for siblings. We appreciate your understanding! \nRegister in Advance Here
URL:https://www.pwsausa.org/event/siblings-community-conversation/
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END:VEVENT
END:VCALENDAR