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X-WR-CALDESC:Events for Cystic Fibrosis Family Connection
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DTSTART;TZID=America/New_York:20250422T180000
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UID:12322-1745344800-1745352000@cffamilyconnection.org
SUMMARY:A Fresh Look for the Kit Taylor Lecture
DESCRIPTION:The annual Kit Taylor Memorial Lectureship\, established in the memory of Kathryn Irene Taylor\, will be held on April 22\, 2025. Our visiting lecturer this year will be Dr. Michael Narkewicz. Dr. Narkewicz is nationally recognized for his expertise in pediatric hepatology\, liver transplantation and cystic fibrosis liver disease. Dr. Narkewicz has been an important leader in advancing GI care for people with CF and has been pivotal in providing mentorship for other CF care center providers around the world. \nCommunity members are invited to an informal gathering on April 22nd at 6:00 pm. Dr. Narkewicz will make a few remarks regarding advances in CF care and his vision for the future. There will also be ample opportunity to engage in conversation with Dr. Narkewicz as well as other members of the CF community. \nThe community event will be held at Sager Beer Works/Stoneyard Brewing Company. Food\, beer and non-alcoholic beverages will be provided. Because this is an indoor venue\, standard infection control protocols will be followed; masks and hand sanitizer will be available on site. Regrettably\, attendance by individuals with CF may be limited to one person\, but other members of the family and support network are welcomed. \nTo assist with arrangements for the evening\, please contact Alexandra Johnson (Alexandra_johnson@urmc.rochester.edu) by April 15th to express your interest in attending this event. Any questions about the event may also be directed to Alexandra. \nThis event is made possible by the support from the Kit Taylor Memorial Fund and the URMC Department of Pediatrics.
URL:https://cffamilyconnection.org/event/a-fresh-look-for-the-kit-taylor-lecture/
LOCATION:Sager Beer Works/Stoneyard Brewing Company\, 46 Sager Dr Suite E\, Rochester\, NY\, 14607
CATEGORIES:Information Event,Social Event
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DTSTART;TZID=America/New_York:20230925T190000
DTEND;TZID=America/New_York:20230925T190000
DTSTAMP:20260421T092743
CREATED:20230825T010931Z
LAST-MODIFIED:20230825T012258Z
UID:10667-1695668400-1695668400@cffamilyconnection.org
SUMMARY:Webinar: Getting Older and Wiser: The Complexities of Ageing with Cystic Fibrosis
DESCRIPTION:Cystic Fibrosis Canada is hosting a webinar dealing with issues arising from the aging of the CF population. Here is the announcement from Cystic Fibrosis Canada: \nAre you curious about the challenges and complexities faced by individuals with cystic fibrosis (CF) as they age? Join us for a webinar featuring  Dr. Anne Stephenson\, Medical Director Canadian Cystic Fibrosis Registry and CF Physician at St. Michael’s Hospital.   \nWhen: September 25 from 7-8 pm ETWhere: Zoom \nDr. Stephenson will share  her  research project about  the emerging complexities that may arise as the Canadian CF population ages. Attendees will have the opportunity to participate in a brief Q&A with Dr. Stephenson at the end of the session.  \nKey Points of Discussion:  \n\nThe shifting focus from pediatric care to understanding ageing with CF \nExploring the impact of emerging complications on older CF patients \nAddressing gaps in care and identifying barriers to optimal healthcare \nFuture directions for research and implications for CF Canada’s registry \n\nRegister for the event today: Getting older and wiser: the complexities of ageing with cystic fibrosis \nDr. Stephenson’s research project is funded by Cystic Fibrosis Canada and includes one year of funding from Canadian Institutes of Health Research Institute of Circulatory and Respiratory Health (CIHR-ICRH). The project was awarded Cystic Fibrosis Canada’s Cathleen Morrison Research Impact Award\, named after CF Canada’s longest serving CEO and awarded to the proposal ranked highest by our community reviewers as having the potential for a strong impact on the CF community.    \nFor inquiries\, or to submit questions in advance to Dr. Stephenson\, please contact hello@cysticfibrosis.ca.
URL:https://cffamilyconnection.org/event/webinar-getting-older-and-wiser-the-complexities-of-ageing-with-cystic-fibrosis/
LOCATION:On-line Webinar
CATEGORIES:Information Event
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DTSTART;TZID=America/New_York:20230418T190000
DTEND;TZID=America/New_York:20230418T203000
DTSTAMP:20260421T092743
CREATED:20230323T022004Z
LAST-MODIFIED:20240520T031439Z
UID:10157-1681844400-1681849800@cffamilyconnection.org
SUMMARY:43rd Annual Kit Taylor Memorial Lecture
DESCRIPTION:An important local tradition continues with the 43rd Annual Kit Taylor Memorial Lecture. This year\, Dr. Virginia Stallings will present an “Update on Nutrition Care for Children and Adults with CF.” You can see the details in the flyer to the left. \nAs in recent years\, the lecture will be held in the Kaplan Room at Golisano Children’s Hospital with a Zoom broadcast for those who cannot – or choose not – to attend in person. Anyone attending in person is asked to wear a mask. Consistent with Cystic Fibrosis Foundation infection control protocols\, individuals with CF are encouraged to participate through the Zoom session. The link for the virtual session is:  \nParking passes for the Strong garage will be provided to all attendees.
URL:https://cffamilyconnection.org/event/43rd-annual-kit-taylor-memorial-lecture/
LOCATION:Golisano Children’s Hospital\, 601 Elmwood Avenue\, Rochester\, NY\, 14620\, United States
CATEGORIES:Information Event
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