BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Prader-Willi Syndrome Association | USA - ECPv6.15.20//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Prader-Willi Syndrome Association | USA
X-ORIGINAL-URL:https://www.pwsausa.org
X-WR-CALDESC:Events for Prader-Willi Syndrome Association | USA
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:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20260308T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20261101T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20270314T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20271107T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20280312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20281105T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260501
DTEND;VALUE=DATE:20260601
DTSTAMP:20260429T105033
CREATED:20260408T200758Z
LAST-MODIFIED:20260408T200758Z
UID:66740-1777593600-1780271999@www.pwsausa.org
SUMMARY:United In Action - PWS Awareness Month Initiative
DESCRIPTION:Question:Female\, 29 years old\, deletion subtype Is there a connection and established pattern of he (hepatitis encephalitis) as a result of extreme eating and foraging that creates the production of ammonia to the brain for PWS folk that along with extreme anxiety and leads to episodes of schizoaffective disorder? Our daughter seems to have gone down that path. She is on lactose and we are wondering if there is more info to take to our Dr. (This has gone on for 24 years once or twice a year\, lasts 4 -7 weeks usually.) Nurse Lynn’s Response:It is difficult to answer this question without the full details; however\, there is not an established connection showing that people with PWS develop hepatitis or brain swelling (encephalopathy) from food foraging that then directly causes ammonia buildup and schizoaffective disorder. However\, there are a few medical pieces that can overlap and are worth exploring with your doctor. In general\, high ammonia levels that affect the brain (hepatic encephalopathy) happen when someone has serious liver disease\, like advanced liver failure. In PWS\, some adults can develop fatty liver disease\, especially over many years. Most of the time this does not cause brain symptoms\, but if liver function is reduced and someone eats a very high-protein diet\, ammonia levels could rise. Lactulose is often used because it helps lower ammonia by moving waste out of the gut faster\, especially if constipation is present. What is well described in PWS is recurrent mental health episodes\, including mood changes\, psychosis\, and symptoms that can look like schizoaffective disorder. These episodes can come back repeatedly over many years. They are frequently triggered by stress\, anxiety\, changes in routine\, illness\, sleep problems\, or food-related distress\, rather than liver disease. Constipation\, gastroparesis\, dehydration\, or certain medications (such as valproate/Depakote and Topiramate) can sometimes make symptoms worse and may mildly affect ammonia levels even when the liver is normal. Keeping track of patterns\, time of year\, stressors\, illness\, and food access changes can also be very helpful\, even if the pattern isn’t obvious at first. Resources:Mental Health – IPWSO The-Mental-Health-of-People-with-PWS-T-Holland.pdf Prader-Willi Syndrome: Clinical Genetics and Diagnostic Aspects with Treatment Approaches – PMC 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/united-in-action-pws-awareness-month-initiative/
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2026/04/UNITED-WE-BRUNCH-1.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260504
DTEND;VALUE=DATE:20260507
DTSTAMP:20260429T105034
CREATED:20251106T202005Z
LAST-MODIFIED:20260303T142745Z
UID:62948-1777852800-1778111999@www.pwsausa.org
SUMMARY:2026 D.C. Fly-In
DESCRIPTION:Question:Female\, 29 years old\, deletion subtype Is there a connection and established pattern of he (hepatitis encephalitis) as a result of extreme eating and foraging that creates the production of ammonia to the brain for PWS folk that along with extreme anxiety and leads to episodes of schizoaffective disorder? Our daughter seems to have gone down that path. She is on lactose and we are wondering if there is more info to take to our Dr. (This has gone on for 24 years once or twice a year\, lasts 4 -7 weeks usually.) Nurse Lynn’s Response:It is difficult to answer this question without the full details; however\, there is not an established connection showing that people with PWS develop hepatitis or brain swelling (encephalopathy) from food foraging that then directly causes ammonia buildup and schizoaffective disorder. However\, there are a few medical pieces that can overlap and are worth exploring with your doctor. In general\, high ammonia levels that affect the brain (hepatic encephalopathy) happen when someone has serious liver disease\, like advanced liver failure. In PWS\, some adults can develop fatty liver disease\, especially over many years. Most of the time this does not cause brain symptoms\, but if liver function is reduced and someone eats a very high-protein diet\, ammonia levels could rise. Lactulose is often used because it helps lower ammonia by moving waste out of the gut faster\, especially if constipation is present. What is well described in PWS is recurrent mental health episodes\, including mood changes\, psychosis\, and symptoms that can look like schizoaffective disorder. These episodes can come back repeatedly over many years. They are frequently triggered by stress\, anxiety\, changes in routine\, illness\, sleep problems\, or food-related distress\, rather than liver disease. Constipation\, gastroparesis\, dehydration\, or certain medications (such as valproate/Depakote and Topiramate) can sometimes make symptoms worse and may mildly affect ammonia levels even when the liver is normal. Keeping track of patterns\, time of year\, stressors\, illness\, and food access changes can also be very helpful\, even if the pattern isn’t obvious at first. Resources:Mental Health – IPWSO The-Mental-Health-of-People-with-PWS-T-Holland.pdf Prader-Willi Syndrome: Clinical Genetics and Diagnostic Aspects with Treatment Approaches – PMC 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-d-c-fly-in/
LOCATION:Yours Truly DC Hotel\, 1143 New Hampshire Ave NW\, Washington\, DC\, DC\, 20037\, United States
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2025/11/DC-Fly-In-2026-Blog.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260516T113000
DTEND;TZID=America/New_York:20260516T113000
DTSTAMP:20260429T105034
CREATED:20260408T201727Z
LAST-MODIFIED:20260408T201727Z
UID:66742-1778931000-1778931000@www.pwsausa.org
SUMMARY:United We Brunch: Magnolias and Mimosas
DESCRIPTION:Question:Female\, 29 years old\, deletion subtype Is there a connection and established pattern of he (hepatitis encephalitis) as a result of extreme eating and foraging that creates the production of ammonia to the brain for PWS folk that along with extreme anxiety and leads to episodes of schizoaffective disorder? Our daughter seems to have gone down that path. She is on lactose and we are wondering if there is more info to take to our Dr. (This has gone on for 24 years once or twice a year\, lasts 4 -7 weeks usually.) Nurse Lynn’s Response:It is difficult to answer this question without the full details; however\, there is not an established connection showing that people with PWS develop hepatitis or brain swelling (encephalopathy) from food foraging that then directly causes ammonia buildup and schizoaffective disorder. However\, there are a few medical pieces that can overlap and are worth exploring with your doctor. In general\, high ammonia levels that affect the brain (hepatic encephalopathy) happen when someone has serious liver disease\, like advanced liver failure. In PWS\, some adults can develop fatty liver disease\, especially over many years. Most of the time this does not cause brain symptoms\, but if liver function is reduced and someone eats a very high-protein diet\, ammonia levels could rise. Lactulose is often used because it helps lower ammonia by moving waste out of the gut faster\, especially if constipation is present. What is well described in PWS is recurrent mental health episodes\, including mood changes\, psychosis\, and symptoms that can look like schizoaffective disorder. These episodes can come back repeatedly over many years. They are frequently triggered by stress\, anxiety\, changes in routine\, illness\, sleep problems\, or food-related distress\, rather than liver disease. Constipation\, gastroparesis\, dehydration\, or certain medications (such as valproate/Depakote and Topiramate) can sometimes make symptoms worse and may mildly affect ammonia levels even when the liver is normal. Keeping track of patterns\, time of year\, stressors\, illness\, and food access changes can also be very helpful\, even if the pattern isn’t obvious at first. Resources:Mental Health – IPWSO The-Mental-Health-of-People-with-PWS-T-Holland.pdf Prader-Willi Syndrome: Clinical Genetics and Diagnostic Aspects with Treatment Approaches – PMC 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/united-we-brunch-magnolias-and-mimosas/
LOCATION:The Shoppe\, 119 Costilla St.\, Colorado Springs\, CO\, 80903\, United States
CATEGORIES:Colorado
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2026/04/DC-Fly-In-2026-social-media.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260531T120000
DTEND;TZID=America/New_York:20260531T140000
DTSTAMP:20260429T105034
CREATED:20260423T194028Z
LAST-MODIFIED:20260423T194028Z
UID:67045-1780228800-1780236000@www.pwsausa.org
SUMMARY:United We Brunch: Hummus & Watermelon
DESCRIPTION:Question:Female\, 29 years old\, deletion subtype Is there a connection and established pattern of he (hepatitis encephalitis) as a result of extreme eating and foraging that creates the production of ammonia to the brain for PWS folk that along with extreme anxiety and leads to episodes of schizoaffective disorder? Our daughter seems to have gone down that path. She is on lactose and we are wondering if there is more info to take to our Dr. (This has gone on for 24 years once or twice a year\, lasts 4 -7 weeks usually.) Nurse Lynn’s Response:It is difficult to answer this question without the full details; however\, there is not an established connection showing that people with PWS develop hepatitis or brain swelling (encephalopathy) from food foraging that then directly causes ammonia buildup and schizoaffective disorder. However\, there are a few medical pieces that can overlap and are worth exploring with your doctor. In general\, high ammonia levels that affect the brain (hepatic encephalopathy) happen when someone has serious liver disease\, like advanced liver failure. In PWS\, some adults can develop fatty liver disease\, especially over many years. Most of the time this does not cause brain symptoms\, but if liver function is reduced and someone eats a very high-protein diet\, ammonia levels could rise. Lactulose is often used because it helps lower ammonia by moving waste out of the gut faster\, especially if constipation is present. What is well described in PWS is recurrent mental health episodes\, including mood changes\, psychosis\, and symptoms that can look like schizoaffective disorder. These episodes can come back repeatedly over many years. They are frequently triggered by stress\, anxiety\, changes in routine\, illness\, sleep problems\, or food-related distress\, rather than liver disease. Constipation\, gastroparesis\, dehydration\, or certain medications (such as valproate/Depakote and Topiramate) can sometimes make symptoms worse and may mildly affect ammonia levels even when the liver is normal. Keeping track of patterns\, time of year\, stressors\, illness\, and food access changes can also be very helpful\, even if the pattern isn’t obvious at first. Resources:Mental Health – IPWSO The-Mental-Health-of-People-with-PWS-T-Holland.pdf Prader-Willi Syndrome: Clinical Genetics and Diagnostic Aspects with Treatment Approaches – PMC 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/united-we-brunch-hummus-watermelon/
LOCATION:Countryside Community Church\, 13130 Faith Plaza\, Omaha\, NE\, 68144\, United States
CATEGORIES:Nebraska
ATTACH;FMTTYPE=image/png:https://www.pwsausa.org/wp-content/uploads/2026/04/Hummus-and-Watermelon.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260620T063000
DTEND;TZID=America/New_York:20260620T063000
DTSTAMP:20260429T105034
CREATED:20260408T204035Z
LAST-MODIFIED:20260408T204114Z
UID:66746-1781937000-1781937000@www.pwsausa.org
SUMMARY:Counting Blessings in Miles Fundraiser
DESCRIPTION:Question:Female\, 29 years old\, deletion subtype Is there a connection and established pattern of he (hepatitis encephalitis) as a result of extreme eating and foraging that creates the production of ammonia to the brain for PWS folk that along with extreme anxiety and leads to episodes of schizoaffective disorder? Our daughter seems to have gone down that path. She is on lactose and we are wondering if there is more info to take to our Dr. (This has gone on for 24 years once or twice a year\, lasts 4 -7 weeks usually.) Nurse Lynn’s Response:It is difficult to answer this question without the full details; however\, there is not an established connection showing that people with PWS develop hepatitis or brain swelling (encephalopathy) from food foraging that then directly causes ammonia buildup and schizoaffective disorder. However\, there are a few medical pieces that can overlap and are worth exploring with your doctor. In general\, high ammonia levels that affect the brain (hepatic encephalopathy) happen when someone has serious liver disease\, like advanced liver failure. In PWS\, some adults can develop fatty liver disease\, especially over many years. Most of the time this does not cause brain symptoms\, but if liver function is reduced and someone eats a very high-protein diet\, ammonia levels could rise. Lactulose is often used because it helps lower ammonia by moving waste out of the gut faster\, especially if constipation is present. What is well described in PWS is recurrent mental health episodes\, including mood changes\, psychosis\, and symptoms that can look like schizoaffective disorder. These episodes can come back repeatedly over many years. They are frequently triggered by stress\, anxiety\, changes in routine\, illness\, sleep problems\, or food-related distress\, rather than liver disease. Constipation\, gastroparesis\, dehydration\, or certain medications (such as valproate/Depakote and Topiramate) can sometimes make symptoms worse and may mildly affect ammonia levels even when the liver is normal. Keeping track of patterns\, time of year\, stressors\, illness\, and food access changes can also be very helpful\, even if the pattern isn’t obvious at first. Resources:Mental Health – IPWSO The-Mental-Health-of-People-with-PWS-T-Holland.pdf Prader-Willi Syndrome: Clinical Genetics and Diagnostic Aspects with Treatment Approaches – PMC 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;VALUE=DATE:20260821
DTEND;VALUE=DATE:20260823
DTSTAMP:20260429T105034
CREATED:20251106T202301Z
LAST-MODIFIED:20260203T162216Z
UID:62952-1787270400-1787443199@www.pwsausa.org
SUMMARY:2026 Residential Providers Conference
DESCRIPTION:Question:Female\, 29 years old\, deletion subtype Is there a connection and established pattern of he (hepatitis encephalitis) as a result of extreme eating and foraging that creates the production of ammonia to the brain for PWS folk that along with extreme anxiety and leads to episodes of schizoaffective disorder? Our daughter seems to have gone down that path. She is on lactose and we are wondering if there is more info to take to our Dr. (This has gone on for 24 years once or twice a year\, lasts 4 -7 weeks usually.) Nurse Lynn’s Response:It is difficult to answer this question without the full details; however\, there is not an established connection showing that people with PWS develop hepatitis or brain swelling (encephalopathy) from food foraging that then directly causes ammonia buildup and schizoaffective disorder. However\, there are a few medical pieces that can overlap and are worth exploring with your doctor. In general\, high ammonia levels that affect the brain (hepatic encephalopathy) happen when someone has serious liver disease\, like advanced liver failure. In PWS\, some adults can develop fatty liver disease\, especially over many years. Most of the time this does not cause brain symptoms\, but if liver function is reduced and someone eats a very high-protein diet\, ammonia levels could rise. Lactulose is often used because it helps lower ammonia by moving waste out of the gut faster\, especially if constipation is present. What is well described in PWS is recurrent mental health episodes\, including mood changes\, psychosis\, and symptoms that can look like schizoaffective disorder. These episodes can come back repeatedly over many years. They are frequently triggered by stress\, anxiety\, changes in routine\, illness\, sleep problems\, or food-related distress\, rather than liver disease. Constipation\, gastroparesis\, dehydration\, or certain medications (such as valproate/Depakote and Topiramate) can sometimes make symptoms worse and may mildly affect ammonia levels even when the liver is normal. Keeping track of patterns\, time of year\, stressors\, illness\, and food access changes can also be very helpful\, even if the pattern isn’t obvious at first. Resources:Mental Health – IPWSO The-Mental-Health-of-People-with-PWS-T-Holland.pdf Prader-Willi Syndrome: Clinical Genetics and Diagnostic Aspects with Treatment Approaches – PMC 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:20260930T173000
DTEND;TZID=America/New_York:20260930T210000
DTSTAMP:20260429T105034
CREATED:20260301T140013Z
LAST-MODIFIED:20260301T160448Z
UID:65894-1790789400-1790802000@www.pwsausa.org
SUMMARY:2nd Annual Prader Silly: A Night of Rare Laughs
DESCRIPTION:Question:Female\, 29 years old\, deletion subtype Is there a connection and established pattern of he (hepatitis encephalitis) as a result of extreme eating and foraging that creates the production of ammonia to the brain for PWS folk that along with extreme anxiety and leads to episodes of schizoaffective disorder? Our daughter seems to have gone down that path. She is on lactose and we are wondering if there is more info to take to our Dr. (This has gone on for 24 years once or twice a year\, lasts 4 -7 weeks usually.) Nurse Lynn’s Response:It is difficult to answer this question without the full details; however\, there is not an established connection showing that people with PWS develop hepatitis or brain swelling (encephalopathy) from food foraging that then directly causes ammonia buildup and schizoaffective disorder. However\, there are a few medical pieces that can overlap and are worth exploring with your doctor. In general\, high ammonia levels that affect the brain (hepatic encephalopathy) happen when someone has serious liver disease\, like advanced liver failure. In PWS\, some adults can develop fatty liver disease\, especially over many years. Most of the time this does not cause brain symptoms\, but if liver function is reduced and someone eats a very high-protein diet\, ammonia levels could rise. Lactulose is often used because it helps lower ammonia by moving waste out of the gut faster\, especially if constipation is present. What is well described in PWS is recurrent mental health episodes\, including mood changes\, psychosis\, and symptoms that can look like schizoaffective disorder. These episodes can come back repeatedly over many years. They are frequently triggered by stress\, anxiety\, changes in routine\, illness\, sleep problems\, or food-related distress\, rather than liver disease. Constipation\, gastroparesis\, dehydration\, or certain medications (such as valproate/Depakote and Topiramate) can sometimes make symptoms worse and may mildly affect ammonia levels even when the liver is normal. Keeping track of patterns\, time of year\, stressors\, illness\, and food access changes can also be very helpful\, even if the pattern isn’t obvious at first. Resources:Mental Health – IPWSO The-Mental-Health-of-People-with-PWS-T-Holland.pdf Prader-Willi Syndrome: Clinical Genetics and Diagnostic Aspects with Treatment Approaches – PMC 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:20260429T105034
CREATED:20251106T202611Z
LAST-MODIFIED:20260223T225202Z
UID:62955-1792108800-1792281599@www.pwsausa.org
SUMMARY:2026 Moms' Retreat
DESCRIPTION:Question:Female\, 29 years old\, deletion subtype Is there a connection and established pattern of he (hepatitis encephalitis) as a result of extreme eating and foraging that creates the production of ammonia to the brain for PWS folk that along with extreme anxiety and leads to episodes of schizoaffective disorder? Our daughter seems to have gone down that path. She is on lactose and we are wondering if there is more info to take to our Dr. (This has gone on for 24 years once or twice a year\, lasts 4 -7 weeks usually.) Nurse Lynn’s Response:It is difficult to answer this question without the full details; however\, there is not an established connection showing that people with PWS develop hepatitis or brain swelling (encephalopathy) from food foraging that then directly causes ammonia buildup and schizoaffective disorder. However\, there are a few medical pieces that can overlap and are worth exploring with your doctor. In general\, high ammonia levels that affect the brain (hepatic encephalopathy) happen when someone has serious liver disease\, like advanced liver failure. In PWS\, some adults can develop fatty liver disease\, especially over many years. Most of the time this does not cause brain symptoms\, but if liver function is reduced and someone eats a very high-protein diet\, ammonia levels could rise. Lactulose is often used because it helps lower ammonia by moving waste out of the gut faster\, especially if constipation is present. What is well described in PWS is recurrent mental health episodes\, including mood changes\, psychosis\, and symptoms that can look like schizoaffective disorder. These episodes can come back repeatedly over many years. They are frequently triggered by stress\, anxiety\, changes in routine\, illness\, sleep problems\, or food-related distress\, rather than liver disease. Constipation\, gastroparesis\, dehydration\, or certain medications (such as valproate/Depakote and Topiramate) can sometimes make symptoms worse and may mildly affect ammonia levels even when the liver is normal. Keeping track of patterns\, time of year\, stressors\, illness\, and food access changes can also be very helpful\, even if the pattern isn’t obvious at first. Resources:Mental Health – IPWSO The-Mental-Health-of-People-with-PWS-T-Holland.pdf Prader-Willi Syndrome: Clinical Genetics and Diagnostic Aspects with Treatment Approaches – PMC 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:20260429T105034
CREATED:20251224T172009Z
LAST-MODIFIED:20251224T172009Z
UID:64110-1815523200-1815868799@www.pwsausa.org
SUMMARY:2027 PWSA | USA United in Hope National Convention
DESCRIPTION:Question:Female\, 29 years old\, deletion subtype Is there a connection and established pattern of he (hepatitis encephalitis) as a result of extreme eating and foraging that creates the production of ammonia to the brain for PWS folk that along with extreme anxiety and leads to episodes of schizoaffective disorder? Our daughter seems to have gone down that path. She is on lactose and we are wondering if there is more info to take to our Dr. (This has gone on for 24 years once or twice a year\, lasts 4 -7 weeks usually.) Nurse Lynn’s Response:It is difficult to answer this question without the full details; however\, there is not an established connection showing that people with PWS develop hepatitis or brain swelling (encephalopathy) from food foraging that then directly causes ammonia buildup and schizoaffective disorder. However\, there are a few medical pieces that can overlap and are worth exploring with your doctor. In general\, high ammonia levels that affect the brain (hepatic encephalopathy) happen when someone has serious liver disease\, like advanced liver failure. In PWS\, some adults can develop fatty liver disease\, especially over many years. Most of the time this does not cause brain symptoms\, but if liver function is reduced and someone eats a very high-protein diet\, ammonia levels could rise. Lactulose is often used because it helps lower ammonia by moving waste out of the gut faster\, especially if constipation is present. What is well described in PWS is recurrent mental health episodes\, including mood changes\, psychosis\, and symptoms that can look like schizoaffective disorder. These episodes can come back repeatedly over many years. They are frequently triggered by stress\, anxiety\, changes in routine\, illness\, sleep problems\, or food-related distress\, rather than liver disease. Constipation\, gastroparesis\, dehydration\, or certain medications (such as valproate/Depakote and Topiramate) can sometimes make symptoms worse and may mildly affect ammonia levels even when the liver is normal. Keeping track of patterns\, time of year\, stressors\, illness\, and food access changes can also be very helpful\, even if the pattern isn’t obvious at first. Resources:Mental Health – IPWSO The-Mental-Health-of-People-with-PWS-T-Holland.pdf Prader-Willi Syndrome: Clinical Genetics and Diagnostic Aspects with Treatment Approaches – PMC 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