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X-WR-CALNAME:Prader-Willi Syndrome Association | USA
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X-WR-CALDESC:Events for Prader-Willi Syndrome Association | USA
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DTSTART;VALUE=DATE:20260601
DTEND;VALUE=DATE:20260701
DTSTAMP:20260608T211257
CREATED:20260511T135715Z
LAST-MODIFIED:20260511T135715Z
UID:67174-1780272000-1782863999@www.pwsausa.org
SUMMARY:Move for PWS
DESCRIPTION:Question:Male\, 2 weeks old\, unknown deletion My newborn was just diagnosed with PWS and is in the NICU for feeding alone. They would like to place a G (gastric) tube and then he can go home. He does breastfeed and bottle feed\, but not consistently\, and not the full amount that he needs ever. He is slowly overall increasing his intake by mouth. The attending doctor stated it was against hospital policy to send him home on an NG (nasogastric) tube\, even though I am an RN who deals with NG tubes in my work experience\, due to the risk of bradycardia from a vagus response. I am unsure as to whether I should go ahead with the G tube and get him home or wait and keep pushing for NG discharge. Nurse Lynn’s Response:Research\, including a large recent study of individuals with Prader-Willi syndrome\, shows that many infants with PWS who have early feeding difficulties can be safely supported with NG tubes for several months and often transition to full oral feeding by around 6 months of age. This study found that serious complications were much less common with NG tubes than with G-tubes. Other research in NICU graduates has also shown that babies sent home with NG tubes are more likely to achieve full oral feeding sooner and tend to have fewer hospital visits related to feeding complications. Because your baby is already breastfeeding and bottle-feeding some and is slowly improving\, this is an encouraging sign that feeding skills may continue to grow with time and support. At the same time\, safety is always the top priority. Some hospitals do not allow home NG feeding because of concerns about tube movement\, aspiration\, or possible heart rate changes from vagal stimulation\, and because not all systems are set up to support families at home with NG care. G-tubes can provide stable long-term access and may be appropriate when there is significant aspiration risk\, ongoing breathing issues\, or a clear need for prolonged tube feeding. However\, they require surgery and are linked to higher rates of infection\, leakage\, and other complications\, and they often remain in place longer than families expect. Because you are an RN with experience managing feeding tubes and your baby is showing progress\, it is reasonable to ask your care team about whether a carefully supported trial of home NG feeding could be safe. Discuss swallow studies\, home nursing support\, emergency plans\, and close follow-up. I have attached a link with the published study I wrote about. Resource:Feeding tube use and complications in Prader-Willi syndrome: Data from the Global Prader-Willi Syndrome Registry – PubMed Do you have a question for Nurse Lynn? Submit your question here:								\n				\n					\n				\n		\n					\n				\n				\n					\n                 \n \n                        Your Email Address (this will be used strictly to send you a response and will not be tied to any publication of a response)*Age of Loved One with PWS*Gender*FemaleMalePrefer not to stateGenetic Subtype*DeletionUPDImprintingI don't knowState Where Individual with PWS Lives (Scroll to the end if outside the U.S.)*AlabamaAlaskaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaOhioOklahomaOregonPennsylvaniaRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces PacificOutside of the U.S. If so\, please state where in your question.What is your question for Nurse Lynn?*
URL:https://www.pwsausa.org/event/move-for-pws/
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2026/05/UNITED-WE-BRUNCH-5.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260620T063000
DTEND;TZID=America/New_York:20260620T063000
DTSTAMP:20260608T211257
CREATED:20260408T204035Z
LAST-MODIFIED:20260408T204114Z
UID:66746-1781937000-1781937000@www.pwsausa.org
SUMMARY:Counting Blessings in Miles Fundraiser
DESCRIPTION:Question:Male\, 2 weeks old\, unknown deletion My newborn was just diagnosed with PWS and is in the NICU for feeding alone. They would like to place a G (gastric) tube and then he can go home. He does breastfeed and bottle feed\, but not consistently\, and not the full amount that he needs ever. He is slowly overall increasing his intake by mouth. The attending doctor stated it was against hospital policy to send him home on an NG (nasogastric) tube\, even though I am an RN who deals with NG tubes in my work experience\, due to the risk of bradycardia from a vagus response. I am unsure as to whether I should go ahead with the G tube and get him home or wait and keep pushing for NG discharge. Nurse Lynn’s Response:Research\, including a large recent study of individuals with Prader-Willi syndrome\, shows that many infants with PWS who have early feeding difficulties can be safely supported with NG tubes for several months and often transition to full oral feeding by around 6 months of age. This study found that serious complications were much less common with NG tubes than with G-tubes. Other research in NICU graduates has also shown that babies sent home with NG tubes are more likely to achieve full oral feeding sooner and tend to have fewer hospital visits related to feeding complications. Because your baby is already breastfeeding and bottle-feeding some and is slowly improving\, this is an encouraging sign that feeding skills may continue to grow with time and support. At the same time\, safety is always the top priority. Some hospitals do not allow home NG feeding because of concerns about tube movement\, aspiration\, or possible heart rate changes from vagal stimulation\, and because not all systems are set up to support families at home with NG care. G-tubes can provide stable long-term access and may be appropriate when there is significant aspiration risk\, ongoing breathing issues\, or a clear need for prolonged tube feeding. However\, they require surgery and are linked to higher rates of infection\, leakage\, and other complications\, and they often remain in place longer than families expect. Because you are an RN with experience managing feeding tubes and your baby is showing progress\, it is reasonable to ask your care team about whether a carefully supported trial of home NG feeding could be safe. Discuss swallow studies\, home nursing support\, emergency plans\, and close follow-up. I have attached a link with the published study I wrote about. Resource:Feeding tube use and complications in Prader-Willi syndrome: Data from the Global Prader-Willi Syndrome Registry – PubMed Do you have a question for Nurse Lynn? Submit your question here:								\n				\n					\n				\n		\n					\n				\n				\n					\n                 \n \n                        Your Email Address (this will be used strictly to send you a response and will not be tied to any publication of a response)*Age of Loved One with PWS*Gender*FemaleMalePrefer not to stateGenetic Subtype*DeletionUPDImprintingI don't knowState Where Individual with PWS Lives (Scroll to the end if outside the U.S.)*AlabamaAlaskaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaOhioOklahomaOregonPennsylvaniaRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces PacificOutside of the U.S. If so\, please state where in your question.What is your question for Nurse Lynn?*
URL:https://www.pwsausa.org/event/counting-blessings-in-miles-fundraiser/
CATEGORIES:Michigan
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2026/04/DC-Fly-In-2026-social-media-1.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260715T180000
DTEND;TZID=America/New_York:20260715T180000
DTSTAMP:20260608T211257
CREATED:20260514T152147Z
LAST-MODIFIED:20260514T152147Z
UID:67237-1784138400-1784138400@www.pwsausa.org
SUMMARY:Dancing Through the Decades
DESCRIPTION:Question:Male\, 2 weeks old\, unknown deletion My newborn was just diagnosed with PWS and is in the NICU for feeding alone. They would like to place a G (gastric) tube and then he can go home. He does breastfeed and bottle feed\, but not consistently\, and not the full amount that he needs ever. He is slowly overall increasing his intake by mouth. The attending doctor stated it was against hospital policy to send him home on an NG (nasogastric) tube\, even though I am an RN who deals with NG tubes in my work experience\, due to the risk of bradycardia from a vagus response. I am unsure as to whether I should go ahead with the G tube and get him home or wait and keep pushing for NG discharge. Nurse Lynn’s Response:Research\, including a large recent study of individuals with Prader-Willi syndrome\, shows that many infants with PWS who have early feeding difficulties can be safely supported with NG tubes for several months and often transition to full oral feeding by around 6 months of age. This study found that serious complications were much less common with NG tubes than with G-tubes. Other research in NICU graduates has also shown that babies sent home with NG tubes are more likely to achieve full oral feeding sooner and tend to have fewer hospital visits related to feeding complications. Because your baby is already breastfeeding and bottle-feeding some and is slowly improving\, this is an encouraging sign that feeding skills may continue to grow with time and support. At the same time\, safety is always the top priority. Some hospitals do not allow home NG feeding because of concerns about tube movement\, aspiration\, or possible heart rate changes from vagal stimulation\, and because not all systems are set up to support families at home with NG care. G-tubes can provide stable long-term access and may be appropriate when there is significant aspiration risk\, ongoing breathing issues\, or a clear need for prolonged tube feeding. However\, they require surgery and are linked to higher rates of infection\, leakage\, and other complications\, and they often remain in place longer than families expect. Because you are an RN with experience managing feeding tubes and your baby is showing progress\, it is reasonable to ask your care team about whether a carefully supported trial of home NG feeding could be safe. Discuss swallow studies\, home nursing support\, emergency plans\, and close follow-up. I have attached a link with the published study I wrote about. Resource:Feeding tube use and complications in Prader-Willi syndrome: Data from the Global Prader-Willi Syndrome Registry – PubMed Do you have a question for Nurse Lynn? Submit your question here:								\n				\n					\n				\n		\n					\n				\n				\n					\n                 \n \n                        Your Email Address (this will be used strictly to send you a response and will not be tied to any publication of a response)*Age of Loved One with PWS*Gender*FemaleMalePrefer not to stateGenetic Subtype*DeletionUPDImprintingI don't knowState Where Individual with PWS Lives (Scroll to the end if outside the U.S.)*AlabamaAlaskaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaOhioOklahomaOregonPennsylvaniaRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces PacificOutside of the U.S. If so\, please state where in your question.What is your question for Nurse Lynn?*
URL:https://www.pwsausa.org/event/dancing-through-the-decades/
LOCATION:Red Stick Social\, 1503 Government St\, Baton Rouge\, LA\, 70802\, United States
CATEGORIES:Louisiana
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2026/05/dance-silly-sponsors-1.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260724
DTEND;VALUE=DATE:20260727
DTSTAMP:20260608T211257
CREATED:20260511T211443Z
LAST-MODIFIED:20260511T211443Z
UID:67204-1784851200-1785110399@www.pwsausa.org
SUMMARY:2026 DADventure
DESCRIPTION:Question:Male\, 2 weeks old\, unknown deletion My newborn was just diagnosed with PWS and is in the NICU for feeding alone. They would like to place a G (gastric) tube and then he can go home. He does breastfeed and bottle feed\, but not consistently\, and not the full amount that he needs ever. He is slowly overall increasing his intake by mouth. The attending doctor stated it was against hospital policy to send him home on an NG (nasogastric) tube\, even though I am an RN who deals with NG tubes in my work experience\, due to the risk of bradycardia from a vagus response. I am unsure as to whether I should go ahead with the G tube and get him home or wait and keep pushing for NG discharge. Nurse Lynn’s Response:Research\, including a large recent study of individuals with Prader-Willi syndrome\, shows that many infants with PWS who have early feeding difficulties can be safely supported with NG tubes for several months and often transition to full oral feeding by around 6 months of age. This study found that serious complications were much less common with NG tubes than with G-tubes. Other research in NICU graduates has also shown that babies sent home with NG tubes are more likely to achieve full oral feeding sooner and tend to have fewer hospital visits related to feeding complications. Because your baby is already breastfeeding and bottle-feeding some and is slowly improving\, this is an encouraging sign that feeding skills may continue to grow with time and support. At the same time\, safety is always the top priority. Some hospitals do not allow home NG feeding because of concerns about tube movement\, aspiration\, or possible heart rate changes from vagal stimulation\, and because not all systems are set up to support families at home with NG care. G-tubes can provide stable long-term access and may be appropriate when there is significant aspiration risk\, ongoing breathing issues\, or a clear need for prolonged tube feeding. However\, they require surgery and are linked to higher rates of infection\, leakage\, and other complications\, and they often remain in place longer than families expect. Because you are an RN with experience managing feeding tubes and your baby is showing progress\, it is reasonable to ask your care team about whether a carefully supported trial of home NG feeding could be safe. Discuss swallow studies\, home nursing support\, emergency plans\, and close follow-up. I have attached a link with the published study I wrote about. Resource:Feeding tube use and complications in Prader-Willi syndrome: Data from the Global Prader-Willi Syndrome Registry – PubMed Do you have a question for Nurse Lynn? Submit your question here:								\n				\n					\n				\n		\n					\n				\n				\n					\n                 \n \n                        Your Email Address (this will be used strictly to send you a response and will not be tied to any publication of a response)*Age of Loved One with PWS*Gender*FemaleMalePrefer not to stateGenetic Subtype*DeletionUPDImprintingI don't knowState Where Individual with PWS Lives (Scroll to the end if outside the U.S.)*AlabamaAlaskaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaOhioOklahomaOregonPennsylvaniaRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces PacificOutside of the U.S. If so\, please state where in your question.What is your question for Nurse Lynn?*
URL:https://www.pwsausa.org/event/2026-dadventure/
LOCATION:Sandia Resort and Casino\, 30 Rainbow Rd\, Albuquerque\, NM\, 87113\, United States
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2026/05/2026-DC-Fly-In-Graphic-2.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260821
DTEND;VALUE=DATE:20260823
DTSTAMP:20260608T211257
CREATED:20251106T202301Z
LAST-MODIFIED:20260203T162216Z
UID:62952-1787270400-1787443199@www.pwsausa.org
SUMMARY:2026 Residential Providers Conference
DESCRIPTION:Question:Male\, 2 weeks old\, unknown deletion My newborn was just diagnosed with PWS and is in the NICU for feeding alone. They would like to place a G (gastric) tube and then he can go home. He does breastfeed and bottle feed\, but not consistently\, and not the full amount that he needs ever. He is slowly overall increasing his intake by mouth. The attending doctor stated it was against hospital policy to send him home on an NG (nasogastric) tube\, even though I am an RN who deals with NG tubes in my work experience\, due to the risk of bradycardia from a vagus response. I am unsure as to whether I should go ahead with the G tube and get him home or wait and keep pushing for NG discharge. Nurse Lynn’s Response:Research\, including a large recent study of individuals with Prader-Willi syndrome\, shows that many infants with PWS who have early feeding difficulties can be safely supported with NG tubes for several months and often transition to full oral feeding by around 6 months of age. This study found that serious complications were much less common with NG tubes than with G-tubes. Other research in NICU graduates has also shown that babies sent home with NG tubes are more likely to achieve full oral feeding sooner and tend to have fewer hospital visits related to feeding complications. Because your baby is already breastfeeding and bottle-feeding some and is slowly improving\, this is an encouraging sign that feeding skills may continue to grow with time and support. At the same time\, safety is always the top priority. Some hospitals do not allow home NG feeding because of concerns about tube movement\, aspiration\, or possible heart rate changes from vagal stimulation\, and because not all systems are set up to support families at home with NG care. G-tubes can provide stable long-term access and may be appropriate when there is significant aspiration risk\, ongoing breathing issues\, or a clear need for prolonged tube feeding. However\, they require surgery and are linked to higher rates of infection\, leakage\, and other complications\, and they often remain in place longer than families expect. Because you are an RN with experience managing feeding tubes and your baby is showing progress\, it is reasonable to ask your care team about whether a carefully supported trial of home NG feeding could be safe. Discuss swallow studies\, home nursing support\, emergency plans\, and close follow-up. I have attached a link with the published study I wrote about. Resource:Feeding tube use and complications in Prader-Willi syndrome: Data from the Global Prader-Willi Syndrome Registry – PubMed Do you have a question for Nurse Lynn? Submit your question here:								\n				\n					\n				\n		\n					\n				\n				\n					\n                 \n \n                        Your Email Address (this will be used strictly to send you a response and will not be tied to any publication of a response)*Age of Loved One with PWS*Gender*FemaleMalePrefer not to stateGenetic Subtype*DeletionUPDImprintingI don't knowState Where Individual with PWS Lives (Scroll to the end if outside the U.S.)*AlabamaAlaskaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaOhioOklahomaOregonPennsylvaniaRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces PacificOutside of the U.S. If so\, please state where in your question.What is your question for Nurse Lynn?*
URL:https://www.pwsausa.org/event/2026-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/2025/11/Residential-Providers-Conference-FBLinkedIn-2-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260919T130000
DTEND;TZID=America/New_York:20260919T130000
DTSTAMP:20260608T211257
CREATED:20260511T142512Z
LAST-MODIFIED:20260511T142547Z
UID:67182-1789822800-1789822800@www.pwsausa.org
SUMMARY:17th Annual Hunter Lens Golf Tournament
DESCRIPTION:Question:Male\, 2 weeks old\, unknown deletion My newborn was just diagnosed with PWS and is in the NICU for feeding alone. They would like to place a G (gastric) tube and then he can go home. He does breastfeed and bottle feed\, but not consistently\, and not the full amount that he needs ever. He is slowly overall increasing his intake by mouth. The attending doctor stated it was against hospital policy to send him home on an NG (nasogastric) tube\, even though I am an RN who deals with NG tubes in my work experience\, due to the risk of bradycardia from a vagus response. I am unsure as to whether I should go ahead with the G tube and get him home or wait and keep pushing for NG discharge. Nurse Lynn’s Response:Research\, including a large recent study of individuals with Prader-Willi syndrome\, shows that many infants with PWS who have early feeding difficulties can be safely supported with NG tubes for several months and often transition to full oral feeding by around 6 months of age. This study found that serious complications were much less common with NG tubes than with G-tubes. Other research in NICU graduates has also shown that babies sent home with NG tubes are more likely to achieve full oral feeding sooner and tend to have fewer hospital visits related to feeding complications. Because your baby is already breastfeeding and bottle-feeding some and is slowly improving\, this is an encouraging sign that feeding skills may continue to grow with time and support. At the same time\, safety is always the top priority. Some hospitals do not allow home NG feeding because of concerns about tube movement\, aspiration\, or possible heart rate changes from vagal stimulation\, and because not all systems are set up to support families at home with NG care. G-tubes can provide stable long-term access and may be appropriate when there is significant aspiration risk\, ongoing breathing issues\, or a clear need for prolonged tube feeding. However\, they require surgery and are linked to higher rates of infection\, leakage\, and other complications\, and they often remain in place longer than families expect. Because you are an RN with experience managing feeding tubes and your baby is showing progress\, it is reasonable to ask your care team about whether a carefully supported trial of home NG feeding could be safe. Discuss swallow studies\, home nursing support\, emergency plans\, and close follow-up. I have attached a link with the published study I wrote about. Resource:Feeding tube use and complications in Prader-Willi syndrome: Data from the Global Prader-Willi Syndrome Registry – PubMed Do you have a question for Nurse Lynn? Submit your question here:								\n				\n					\n				\n		\n					\n				\n				\n					\n                 \n \n                        Your Email Address (this will be used strictly to send you a response and will not be tied to any publication of a response)*Age of Loved One with PWS*Gender*FemaleMalePrefer not to stateGenetic Subtype*DeletionUPDImprintingI don't knowState Where Individual with PWS Lives (Scroll to the end if outside the U.S.)*AlabamaAlaskaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaOhioOklahomaOregonPennsylvaniaRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces PacificOutside of the U.S. If so\, please state where in your question.What is your question for Nurse Lynn?*
URL:https://www.pwsausa.org/event/17th-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/2026/05/Soleno-Letter-Fbook-1.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260930T173000
DTEND;TZID=America/New_York:20260930T210000
DTSTAMP:20260608T211257
CREATED:20260301T140013Z
LAST-MODIFIED:20260301T160448Z
UID:65894-1790789400-1790802000@www.pwsausa.org
SUMMARY:2nd Annual Prader Silly: A Night of Rare Laughs
DESCRIPTION:Question:Male\, 2 weeks old\, unknown deletion My newborn was just diagnosed with PWS and is in the NICU for feeding alone. They would like to place a G (gastric) tube and then he can go home. He does breastfeed and bottle feed\, but not consistently\, and not the full amount that he needs ever. He is slowly overall increasing his intake by mouth. The attending doctor stated it was against hospital policy to send him home on an NG (nasogastric) tube\, even though I am an RN who deals with NG tubes in my work experience\, due to the risk of bradycardia from a vagus response. I am unsure as to whether I should go ahead with the G tube and get him home or wait and keep pushing for NG discharge. Nurse Lynn’s Response:Research\, including a large recent study of individuals with Prader-Willi syndrome\, shows that many infants with PWS who have early feeding difficulties can be safely supported with NG tubes for several months and often transition to full oral feeding by around 6 months of age. This study found that serious complications were much less common with NG tubes than with G-tubes. Other research in NICU graduates has also shown that babies sent home with NG tubes are more likely to achieve full oral feeding sooner and tend to have fewer hospital visits related to feeding complications. Because your baby is already breastfeeding and bottle-feeding some and is slowly improving\, this is an encouraging sign that feeding skills may continue to grow with time and support. At the same time\, safety is always the top priority. Some hospitals do not allow home NG feeding because of concerns about tube movement\, aspiration\, or possible heart rate changes from vagal stimulation\, and because not all systems are set up to support families at home with NG care. G-tubes can provide stable long-term access and may be appropriate when there is significant aspiration risk\, ongoing breathing issues\, or a clear need for prolonged tube feeding. However\, they require surgery and are linked to higher rates of infection\, leakage\, and other complications\, and they often remain in place longer than families expect. Because you are an RN with experience managing feeding tubes and your baby is showing progress\, it is reasonable to ask your care team about whether a carefully supported trial of home NG feeding could be safe. Discuss swallow studies\, home nursing support\, emergency plans\, and close follow-up. I have attached a link with the published study I wrote about. Resource:Feeding tube use and complications in Prader-Willi syndrome: Data from the Global Prader-Willi Syndrome Registry – PubMed Do you have a question for Nurse Lynn? Submit your question here:								\n				\n					\n				\n		\n					\n				\n				\n					\n                 \n \n                        Your Email Address (this will be used strictly to send you a response and will not be tied to any publication of a response)*Age of Loved One with PWS*Gender*FemaleMalePrefer not to stateGenetic Subtype*DeletionUPDImprintingI don't knowState Where Individual with PWS Lives (Scroll to the end if outside the U.S.)*AlabamaAlaskaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaOhioOklahomaOregonPennsylvaniaRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces PacificOutside of the U.S. If so\, please state where in your question.What is your question for Nurse Lynn?*
URL:https://www.pwsausa.org/event/2nd-annual-prader-silly-a-night-of-rare-laughs/
LOCATION:Zanies Comedy Night Club Nashville\, 2025 8th Ave S\, Nashville\, TN\, 37204\, United States
CATEGORIES:Tennessee
ATTACH;FMTTYPE=image/jpeg:https://www.pwsausa.org/wp-content/uploads/2026/02/2_PraderSilly_RegisterTickets.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261016
DTEND;VALUE=DATE:20261018
DTSTAMP:20260608T211257
CREATED:20251106T202611Z
LAST-MODIFIED:20260223T225202Z
UID:62955-1792108800-1792281599@www.pwsausa.org
SUMMARY:2026 Moms' Retreat
DESCRIPTION:Question:Male\, 2 weeks old\, unknown deletion My newborn was just diagnosed with PWS and is in the NICU for feeding alone. They would like to place a G (gastric) tube and then he can go home. He does breastfeed and bottle feed\, but not consistently\, and not the full amount that he needs ever. He is slowly overall increasing his intake by mouth. The attending doctor stated it was against hospital policy to send him home on an NG (nasogastric) tube\, even though I am an RN who deals with NG tubes in my work experience\, due to the risk of bradycardia from a vagus response. I am unsure as to whether I should go ahead with the G tube and get him home or wait and keep pushing for NG discharge. Nurse Lynn’s Response:Research\, including a large recent study of individuals with Prader-Willi syndrome\, shows that many infants with PWS who have early feeding difficulties can be safely supported with NG tubes for several months and often transition to full oral feeding by around 6 months of age. This study found that serious complications were much less common with NG tubes than with G-tubes. Other research in NICU graduates has also shown that babies sent home with NG tubes are more likely to achieve full oral feeding sooner and tend to have fewer hospital visits related to feeding complications. Because your baby is already breastfeeding and bottle-feeding some and is slowly improving\, this is an encouraging sign that feeding skills may continue to grow with time and support. At the same time\, safety is always the top priority. Some hospitals do not allow home NG feeding because of concerns about tube movement\, aspiration\, or possible heart rate changes from vagal stimulation\, and because not all systems are set up to support families at home with NG care. G-tubes can provide stable long-term access and may be appropriate when there is significant aspiration risk\, ongoing breathing issues\, or a clear need for prolonged tube feeding. However\, they require surgery and are linked to higher rates of infection\, leakage\, and other complications\, and they often remain in place longer than families expect. Because you are an RN with experience managing feeding tubes and your baby is showing progress\, it is reasonable to ask your care team about whether a carefully supported trial of home NG feeding could be safe. Discuss swallow studies\, home nursing support\, emergency plans\, and close follow-up. I have attached a link with the published study I wrote about. Resource:Feeding tube use and complications in Prader-Willi syndrome: Data from the Global Prader-Willi Syndrome Registry – PubMed Do you have a question for Nurse Lynn? Submit your question here:								\n				\n					\n				\n		\n					\n				\n				\n					\n                 \n \n                        Your Email Address (this will be used strictly to send you a response and will not be tied to any publication of a response)*Age of Loved One with PWS*Gender*FemaleMalePrefer not to stateGenetic Subtype*DeletionUPDImprintingI don't knowState Where Individual with PWS Lives (Scroll to the end if outside the U.S.)*AlabamaAlaskaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaOhioOklahomaOregonPennsylvaniaRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces PacificOutside of the U.S. If so\, please state where in your question.What is your question for Nurse Lynn?*
URL:https://www.pwsausa.org/event/2026-moms-retreat/
LOCATION:Grand Hyatt Deer Valley Hotel\, 1702 Glencoe Mountain Wy\, Park City\, UT\, 84060\, United States
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/11/Moms-Retreat-2026-png.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20270714
DTEND;VALUE=DATE:20270718
DTSTAMP:20260608T211257
CREATED:20251224T172009Z
LAST-MODIFIED:20251224T172009Z
UID:64110-1815523200-1815868799@www.pwsausa.org
SUMMARY:2027 PWSA | USA United in Hope National Convention
DESCRIPTION:Question:Male\, 2 weeks old\, unknown deletion My newborn was just diagnosed with PWS and is in the NICU for feeding alone. They would like to place a G (gastric) tube and then he can go home. He does breastfeed and bottle feed\, but not consistently\, and not the full amount that he needs ever. He is slowly overall increasing his intake by mouth. The attending doctor stated it was against hospital policy to send him home on an NG (nasogastric) tube\, even though I am an RN who deals with NG tubes in my work experience\, due to the risk of bradycardia from a vagus response. I am unsure as to whether I should go ahead with the G tube and get him home or wait and keep pushing for NG discharge. Nurse Lynn’s Response:Research\, including a large recent study of individuals with Prader-Willi syndrome\, shows that many infants with PWS who have early feeding difficulties can be safely supported with NG tubes for several months and often transition to full oral feeding by around 6 months of age. This study found that serious complications were much less common with NG tubes than with G-tubes. Other research in NICU graduates has also shown that babies sent home with NG tubes are more likely to achieve full oral feeding sooner and tend to have fewer hospital visits related to feeding complications. Because your baby is already breastfeeding and bottle-feeding some and is slowly improving\, this is an encouraging sign that feeding skills may continue to grow with time and support. At the same time\, safety is always the top priority. Some hospitals do not allow home NG feeding because of concerns about tube movement\, aspiration\, or possible heart rate changes from vagal stimulation\, and because not all systems are set up to support families at home with NG care. G-tubes can provide stable long-term access and may be appropriate when there is significant aspiration risk\, ongoing breathing issues\, or a clear need for prolonged tube feeding. However\, they require surgery and are linked to higher rates of infection\, leakage\, and other complications\, and they often remain in place longer than families expect. Because you are an RN with experience managing feeding tubes and your baby is showing progress\, it is reasonable to ask your care team about whether a carefully supported trial of home NG feeding could be safe. Discuss swallow studies\, home nursing support\, emergency plans\, and close follow-up. I have attached a link with the published study I wrote about. Resource:Feeding tube use and complications in Prader-Willi syndrome: Data from the Global Prader-Willi Syndrome Registry – PubMed Do you have a question for Nurse Lynn? Submit your question here:								\n				\n					\n				\n		\n					\n				\n				\n					\n                 \n \n                        Your Email Address (this will be used strictly to send you a response and will not be tied to any publication of a response)*Age of Loved One with PWS*Gender*FemaleMalePrefer not to stateGenetic Subtype*DeletionUPDImprintingI don't knowState Where Individual with PWS Lives (Scroll to the end if outside the U.S.)*AlabamaAlaskaArizonaArkansasCaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisianaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaOhioOklahomaOregonPennsylvaniaRhode IslandSouth CarolinaSouth DakotaTennesseeTexasUtahVermontVirginiaWashingtonWest VirginiaWisconsinWyomingArmed Forces AmericasArmed Forces EuropeArmed Forces PacificOutside of the U.S. If so\, please state where in your question.What is your question for Nurse Lynn?*
URL:https://www.pwsausa.org/event/2027-pwsa-usa-united-in-hope-national-convention/
LOCATION:Caribe Royale Orlando\, 8101 World Center Drive\, Orlando\, Florida\, 32821
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/12/2027-PWSA-National-Convention-png.webp
END:VEVENT
END:VCALENDAR