BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Prader-Willi Syndrome Association | USA - ECPv6.15.20//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-ORIGINAL-URL:https://www.pwsausa.org
X-WR-CALDESC:Events for Prader-Willi Syndrome Association | USA
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20210314T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20211107T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20220313T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20221106T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/North_Dakota/Center
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20210314T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20211107T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20220313T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20221106T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20230312T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20231105T070000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240806T200000
DTEND;TZID=America/New_York:20240806T210000
DTSTAMP:20260418T082309
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/
LOCATION:OH
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:20260418T082309
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/
LOCATION:OH
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:20260418T082309
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:20260418T082309
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/
LOCATION:OH
CATEGORIES:Ohio
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/03/Click-Here-to-Learn-More-About-BOSS-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240326T200000
DTEND;TZID=America/New_York:20240326T210000
DTSTAMP:20260418T082309
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/
LOCATION:OH
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/03/Tuesday-March-26-2024-5pm-PST-8pm-EST.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240323T180000
DTEND;TZID=America/New_York:20240323T230000
DTSTAMP:20260418T082309
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/
LOCATION:OH
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2024/01/Clint-Text-for-Ticket-Sales_Page_2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240312T200000
DTEND;TZID=America/New_York:20240312T210000
DTSTAMP:20260418T082309
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/
LOCATION:OH
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/03/Untitled-design.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240201
DTEND;VALUE=DATE:20240316
DTSTAMP:20260418T082309
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/
LOCATION:OH
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/01/Untitled-design-2024-01-02T165524.937-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240116
DTEND;VALUE=DATE:20240319
DTSTAMP:20260418T082309
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/
LOCATION:OH
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2024/01/Untitled-design-2024-01-11T164803.564.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231101
DTEND;VALUE=DATE:20240101
DTSTAMP:20260418T082309
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/
LOCATION:OH
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2023/10/Add-a-heading-5.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231026T100000
DTEND;TZID=America/New_York:20231026T110000
DTSTAMP:20260418T082309
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/
LOCATION:OH
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2023/10/CLICK-HERE-TO-ACCESS-THE-LIVE-BROADCAST-LINK-6.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231021T183000
DTEND;TZID=America/New_York:20231021T220000
DTSTAMP:20260418T082309
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
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2023/08/1320.1292724866.custom.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231012
DTEND;VALUE=DATE:20231016
DTSTAMP:20260418T082309
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/
LOCATION:OH
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2023/07/Search-Cvent-Events-in-your-App-Store-or-Google-Play-Store-38.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231007T120000
DTEND;TZID=America/New_York:20231007T170000
DTSTAMP:20260418T082309
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
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2023/08/14th-Annual-Hunter-Lens-Golf-Tournament-TeamraiserBanner.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231006T080000
DTEND;TZID=America/New_York:20231006T170000
DTSTAMP:20260418T082309
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
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2023/08/2nd-Annual.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230926T180000
DTEND;TZID=America/New_York:20230926T190000
DTSTAMP:20260418T082309
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/
LOCATION:OH
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2023/09/Add-a-heading.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230809T200000
DTEND;TZID=America/New_York:20230809T210000
DTSTAMP:20260418T082309
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/
LOCATION:OH
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2023/07/Search-Cvent-Events-in-your-App-Store-or-Google-Play-Store-10.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230712T140000
DTEND;TZID=America/New_York:20230712T150000
DTSTAMP:20260418T082309
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/
LOCATION:OH
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2023/07/Search-Cvent-Events-in-your-App-Store-or-Google-Play-Store-10.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230622T120000
DTEND;TZID=America/New_York:20230622T163000
DTSTAMP:20260418T082309
CREATED:20230419T142628Z
LAST-MODIFIED:20230516T154856Z
UID:41297-1687435200-1687451400@www.pwsausa.org
SUMMARY:FDA Externally-Led Patient-Focused Drug Development Meeting
DESCRIPTION:Your Voice Will Make a Difference!\n\n\n\n\nPrader-Willi Syndrome’s First Externally Led Patient-Focused Drug Development Meeting will take place June 22\, 2023 from 12:00 – 4:30pm EST both Virtually Via Zoom and In-Person at the Hilton Orlando Buena Vista Palace.\nCLICK HERE TO REGISTER TO ATTEND THE EL-PFDD MEETING VIRTUALLY \n\n\n\n\n\n\n\n\nThe Prader-Willi Syndrome community is invited to attend our first Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting at PWSA USA’s National Convention this summer. \n\n\n\n\nThis meeting provides an opportunity for patients\, caregivers\, and advocates to share their perspectives and experiences with the FDA and drug developers. By attending this meeting\, you can make your voice heard and help shape the development of new treatments and therapies for Prader-Willi syndrome. Together\, we can work towards improving the lives of those affected by this rare and complex genetic disorder. \n\n\n\n\nDon’t miss this chance to be part of the conversation and make a difference in the future of PWS treatment options. You can choose to attend the FREE in-person EL-PFDD when you register for PWSA | USA’s 37th National Convention OR you can attend virtually by clicking here. \n\n\nAhead of the event\, we are collecting testimonials from our PWS community. You can share your personal story\, the struggles your family and loved one living with the syndrome have faced\, or anything else you want others to consider. These testimonials will be included in our Voice of the Patient Report\, which becomes published papers. \n\n\n\n\nThis will allow pharmaceutical companies access to the report so they can develop protocols that best fit our community’s needs. Meaning\, with this report\, WE can help with the development of drugs to help our entire community. Share your testimonial by clicking here.
URL:https://www.pwsausa.org/event/fda-externally-led-patient-focused-drug-development-meeting/
LOCATION:Hilton Orlando Buena Vista Palace\, 1900 East Buena Vista Drive\, Lake Buena Vista\, Florida\, 32830\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2023/02/elpfdd-4.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230621
DTEND;VALUE=DATE:20230626
DTSTAMP:20260418T082309
CREATED:20221216T183320Z
LAST-MODIFIED:20230419T143133Z
UID:38695-1687305600-1687737599@www.pwsausa.org
SUMMARY:PWSA | USA 2023 National Convention
DESCRIPTION:We invite you to join us June 21 – June 24\, 2023\, in sunny Orlando\, Florida at the Hilton Orlando Buena Vista Palace. \nPWSA | USA’s Convention will provide exciting opportunities to learn\, connect (and reconnect)\, and hear about the latest PWS research. Taking place in Orlando\, FL on June 21-24\, 2023\, this world-class event will include Medical & Scientific\, Professional Providers\, and Family Conferences\, as well as the newly renamed “PWS Kids Camp” for infants through adults\, and their siblings. We are also honored to host and include all PWS stakeholders during our Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting\, which is an FDA program. \nWhether you have a loved one with PWS\, are a professional provider\, a physician\, or scientist\, the 2023 Convention has something for everyone. Register TODAY by clicking the button below. We hope to see you there!
URL:https://www.pwsausa.org/event/pwsa-usa-2023-national-convention/
LOCATION:OH
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2022/12/conv.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230515T193000
DTEND;TZID=America/New_York:20230515T220000
DTSTAMP:20260418T082309
CREATED:20230427T180030Z
LAST-MODIFIED:20230427T180030Z
UID:41558-1684179000-1684188000@www.pwsausa.org
SUMMARY:PWS Jeopardy!
DESCRIPTION:When: Monday\, May 15\, 2023 | Games at 7:30 pm EST and 9:00 pm EST\nWhere: Zoom\nCost: Free!\nTo celebrate and raise awareness for PWS Awareness Month\, bring your family\, friends\, and brain power for a fun night of PWS Jeopardy. FREE for all to attend! \nREGISTER BELOW:\nClick Here to register to attend the 7:30 p.m. EST Jeopardy game \nClick Here to register to attend the 9:00 p.m. EST Jeopardy game
URL:https://www.pwsausa.org/event/pws-jeopardy/
LOCATION:OH
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2023/04/www.pwsausa.orgfamilysupportcampaign.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230325
DTEND;VALUE=DATE:20230326
DTSTAMP:20260418T082309
CREATED:20221202T182453Z
LAST-MODIFIED:20230313T080231Z
UID:38691-1679702400-1679788799@www.pwsausa.org
SUMMARY:2023 Clint Hurdle Hot Stove Dinner
DESCRIPTION:PURCHASE YOUR TICKET TO THE 9TH ANNUAL CLINT HURDLE HOT STOVE DINNER HERE \nGet ready for some fun in the sun! For those interested in attending the 2023 Clint Hurdle Hot Stove Dinner\, you can now make your hotel reservations in our room block HERE. The event will be held Saturday\, March 25\, 2023 at the Key Royale Club on Anna Maria Island\, FL. \nWe will share more details\, including registration\, in the near future. We hope to see you there!
URL:https://www.pwsausa.org/event/2023-clint-hurdle-hot-stove-dinner/
LOCATION:Anna Maria Island\, FL\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2022/12/Hot-Stove-fbook.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230309
DTEND;VALUE=DATE:20230310
DTSTAMP:20260418T082309
CREATED:20230106T152316Z
LAST-MODIFIED:20230106T152316Z
UID:38855-1678320000-1678406399@www.pwsausa.org
SUMMARY:PWSA | USA School Success Summit
DESCRIPTION:When: Thursday\, March 9\, 2023 \nMore details coming soon!
URL:https://www.pwsausa.org/event/pwsa-usa-school-success-summit/
LOCATION:OH
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230124T140000
DTEND;TZID=America/New_York:20230124T200000
DTSTAMP:20260418T082309
CREATED:20230106T151810Z
LAST-MODIFIED:20230106T151810Z
UID:38853-1674568800-1674590400@www.pwsausa.org
SUMMARY:PWSA | USA Behavior Summit
DESCRIPTION:There’s still time to register for PWSA | USA’s first-ever Behavior Summit\, which will be held Tuesday\, January 24\, 2023 from 2:00 – 7:45 p.m. EST! The Summit will include several webinar presentations from specialists who are experts in behavior issues\, and is for both parents and healthcare providers.\n\n\n\nDuring this FREE virtual event\, you will learn about the ABCs of behavior\, how to prevent challenging behaviors\, and so much more! Click HERE to register TODAY!
URL:https://www.pwsausa.org/event/pwsa-usa-behavior-summit/
LOCATION:OH
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2022/12/websitebanner-behaviorsummit2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230117T200000
DTEND;TZID=America/New_York:20230117T210000
DTSTAMP:20260418T082309
CREATED:20230106T151541Z
LAST-MODIFIED:20230106T151541Z
UID:38851-1673985600-1673989200@www.pwsausa.org
SUMMARY:2023 Advocacy in Action Kick-Off Webinar
DESCRIPTION:2022 was a groundbreaking year for PWSA | USA’s Advocacy efforts and it was thanks to you\, our amazing community and volunteers. As we step into a new year\, we are excited to share more advocacy opportunities on the horizon. \nPlease join us Tuesday\, January 17\, 2023 at 8:00 p.m. EST with PWSA | USA Advocacy & Awareness Director Dorothea Lantz for our first 2023 Advocacy in Action webinar. Dorothea will share details about upcoming initiatives and the much-anticipated launch of PWSA | USA’s Walk a Mile in Their Genes! We can’t wait to show you what’s in store. \nRegister in advance by CLICKING HERE.
URL:https://www.pwsausa.org/event/2023-advocacy-in-action-kick-off-webinar/
LOCATION:OH
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2022/01/websitebanner-advocacy.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221011T200000
DTEND;TZID=America/New_York:20221011T210000
DTSTAMP:20260418T082309
CREATED:20221005T153307Z
LAST-MODIFIED:20221007T213226Z
UID:37541-1665518400-1665522000@www.pwsausa.org
SUMMARY:Rare(ly) Missed Opportunities: Your PWS Financial Guide
DESCRIPTION:Join us to learn about PWSA | USA’s newest initiative “Rare(ly) Missed Opportunities: Your PWS Financial Guide.” During this interactive webinar\, we will walk you through navigating our newest web based resource to find waivers in your state\, financial literacy webinars and downloadable documents. \nREGISTER IN ADVANCE HERE
URL:https://www.pwsausa.org/event/rarely-missed-opportunities-your-pws-financial-guide/
LOCATION:OH
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2022/10/commconvo-financialguide-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221001T170000
DTEND;TZID=America/New_York:20221001T230000
DTSTAMP:20260418T082309
CREATED:20220816T160526Z
LAST-MODIFIED:20220816T160526Z
UID:36983-1664643600-1664665200@www.pwsausa.org
SUMMARY:Country for a Cure
DESCRIPTION:LEARN MORE HERE
URL:https://www.pwsausa.org/event/country-for-a-cure/
LOCATION:Marjorie Park @ Fiddler’s Green Amphitheatre\, 6331 S Fiddlers Green Cir\, Greenwood Village\, CO\, 80111\, United States
CATEGORIES:Colorado
ORGANIZER;CN="PWSA of Colorado":MAILTO:info@pwsaco.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/North_Dakota/Center:20221001T100000
DTEND;TZID=America/North_Dakota/Center:20221001T133000
DTSTAMP:20260418T082309
CREATED:20220915T172852Z
LAST-MODIFIED:20220916T180457Z
UID:37284-1664618400-1664631000@www.pwsausa.org
SUMMARY:PWSA of Oklahoma: A Day to Shine Conference Luncheon
DESCRIPTION:DOWNLOAD AND COMPLETE THE REGISTRATION FORM HERE \nREGISTRATION DEADLINE: September 19\, 2022 \n \n  \n 
URL:https://www.pwsausa.org/event/pwsa-of-oklahoma-a-day-to-shine-conference-luncheon/
LOCATION:Oklahoma City Science Museum\, 2020 Remington Pl\, Oklahoma City\, OK\, 73111\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220927T123000
DTEND;TZID=America/New_York:20220927T193000
DTSTAMP:20260418T082309
CREATED:20220816T155800Z
LAST-MODIFIED:20220816T155800Z
UID:36978-1664281800-1664307000@www.pwsausa.org
SUMMARY:PWSA | USA Sleep Summit
DESCRIPTION:To learn more about sleep issues in individuals living with PWS\, PWSA | USA created a six-month program entitled Sleep Issues in Prader-Willi Syndrome: A Deep Dive for Parents & Practitioners\, which included monthly focus group discussions led by a trained facilitator. \nThe program will conclude with a full day PWSA | USA Virtual Sleep Summit\, which will be held on Tuesday\, September 27\, 2022 starting at 12:30 p.m. EST. The Sleep Summit will include several webinar presentations from physicians for both parents and healthcare providers. \nCLICK HERE TO LEARN MORE
URL:https://www.pwsausa.org/event/pwsa-usa-sleep-summit/
LOCATION:OH
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2022/08/Slide3-example-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220924T090000
DTEND;TZID=America/New_York:20220924T180000
DTSTAMP:20260418T082309
CREATED:20220819T135926Z
LAST-MODIFIED:20220819T135926Z
UID:37026-1664010000-1664042400@www.pwsausa.org
SUMMARY:PWSA of Ohio Family Activity Day
DESCRIPTION:If you’re interested in attending\, please download and fill out the registration form by clicking HERE. \n 
URL:https://www.pwsausa.org/event/pwsa-of-ohio-family-activity-day/
LOCATION:Recreation Unlimited\, 7700 Piper Road\, Ashley\, OH\, 43003\, United States
CATEGORIES:Ohio
END:VEVENT
END:VCALENDAR