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X-WR-CALNAME:Cystic Fibrosis Family Connection
X-ORIGINAL-URL:https://cffamilyconnection.org
X-WR-CALDESC:Events for Cystic Fibrosis Family Connection
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DTSTART;TZID=America/New_York:20230925T190000
DTEND;TZID=America/New_York:20230925T190000
DTSTAMP:20260421T183141
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230909T083000
DTEND;TZID=America/New_York:20230909T130000
DTSTAMP:20260421T183141
CREATED:20230525T025546Z
LAST-MODIFIED:20240512T205527Z
UID:10451-1694248200-1694264400@cffamilyconnection.org
SUMMARY:CFFC Living with CF Golf Tournament 2023
DESCRIPTION:The Living with CF Golf Tournament returns to Southern Meadows Golf Club on Saturday\, September 9\, 2023.\nDetails\, including new payment options and online registration\, are presented in Announcing Living with CF Golf Tournament 2023.\nYou can also get the details and a paper entry form by downloading the CFFC Golf Brochure_2023\n  \nYou can now submit your registration electronically using the form below. Visit our Donate page for payment options.
URL:https://cffamilyconnection.org/event/cffc-living-with-cf-golf-tournament-2023/
LOCATION:Southern Meadows Golf Club\, 1025 Rush Scottsville Road\, Rush\, NY\, 14543\, United States
CATEGORIES:CFFC,CFFC Fund Raising
ORGANIZER;CN="Cystic Fibrosis Family Connection":MAILTO:info@cffamilyconnection.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230729T120000
DTEND;TZID=America/New_York:20230729T180000
DTSTAMP:20260421T183141
CREATED:20230419T132925Z
LAST-MODIFIED:20240520T031435Z
UID:10332-1690632000-1690653600@cffamilyconnection.org
SUMMARY:Swinging Fore a Cure Golf Tournament 2023
DESCRIPTION:Swinging for a Cure is organized by ROC Cystic Fibrosis Awareness\, a local charitable organization. The funds raised through this tournament go to the Cystic Fibrosis Foundation. Go to https://roccfa.org/swinging-fore-a-cure to register for the tournament.
URL:https://cffamilyconnection.org/event/swinging-fore-a-cure-golf-tournament-2023/
LOCATION:Mill Creek Golf Club\, 128 Cedars Avenue\, Churchville\, NY\, 14428\, United States
CATEGORIES:Other Fund Raising
ORGANIZER;CN="ROC Cystic Fibrosis Awareness":MAILTO:MSellars@roccfa,org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230614T180000
DTEND;TZID=America/New_York:20230614T203000
DTSTAMP:20260421T183141
CREATED:20230601T000559Z
LAST-MODIFIED:20230601T000910Z
UID:10476-1686765600-1686774600@cffamilyconnection.org
SUMMARY:CFF NextBreath 2023 Day 2
DESCRIPTION:NextBreath is a virtual session presented by the Cystic Fibrosis Foundation. From the CFF website: \nNextBreath is an online two-day event for people with CF who are living with established lung disease or experiencing lung health complications\, and/or living post lung transplant\, as well as their family members and caregivers\, to find support and engage with peers who understand in an inclusive and compassionate setting. \nEach day has a specific focus. The theme for Day 2 is “[t]he second half of the journey: Navigating Life Post-Lung Transplant.” Per CFF: \nYou’ve been waiting months or years for a lung transplant and it’s finally here! But wait\, there’s even more changes to your health than you were expecting. On day two of NextBreath\, explore the holistic transformation that comes from a lung transplant including mental\, physical\, and emotional adjustments. Through a series of small group discussions\, panels\, and 1-on-1 networking opportunities\, attendees will learn about topics such as post-transplant care\, managing medications\, maintaining physical and emotional health\, and discuss strategies for living a healthy and fulfilling life post-transplant. \nCheck the NextBreath page for details about sessions and a link to registration.
URL:https://cffamilyconnection.org/event/cff-nextbreath-2023-day-2/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230613T060000
DTEND;TZID=America/New_York:20230613T203000
DTSTAMP:20260421T183141
CREATED:20230315T215640Z
LAST-MODIFIED:20230601T000109Z
UID:9803-1686636000-1686688200@cffamilyconnection.org
SUMMARY:CFF NextBreath 2023 Day 1
DESCRIPTION:NextBreath is a virtual session presented by the Cystic Fibrosis Foundation. From the CFF website: \nNextBreath is an online two-day event for people with CF who are living with established lung disease or experiencing lung health complications\, and/or living post lung transplant\, as well as their family members and caregivers\, to find support and engage with peers who understand in an inclusive and compassionate setting. \nEach day has a specific focus. The theme for Day 1 is “[t]he loss of physical abilities\, the retention of resilience.” Per CFF: \nJoin others on day one of NextBreath who are dealing with the loss of lung function\, reduced capacity for physical activity\, endurance\, and struggling to live the life you want. Struggling with your lung health puts a strain on your mental health\, your relationships\, and your willpower. Through a series of small group discussions\, panels\, and 1-on-1 networking opportunities\, attendees will hear perspectives from individuals who have\, and are experiencing\, these challenges\, as well as share how they are coping and seeing hope for the future. \nCheck the NextBreath page for details about sessions and a link to registration. \n 
URL:https://cffamilyconnection.org/event/cff-nextbreath-2023-day-1/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230524T100000
DTEND;TZID=America/New_York:20230524T110000
DTSTAMP:20260421T183141
CREATED:20230414T024557Z
LAST-MODIFIED:20230414T024557Z
UID:10317-1684922400-1684926000@cffamilyconnection.org
SUMMARY:2023 AbbVie CF Scholarship Deadline
DESCRIPTION:For details about this year’s AbbVie CF Scholarship program\, and a link to the application site\, read our post 2023 AbbVie CF Scholarship Announced.
URL:https://cffamilyconnection.org/event/2023-abbvie-cf-scholarship-deadline/
LOCATION:NY
CATEGORIES:Scholarship Deadline
ORGANIZER;CN="AbbVie":MAILTO:rasweilera@ruderfinn.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230521T100000
DTEND;TZID=America/New_York:20230521T130000
DTSTAMP:20260421T183141
CREATED:20230315T212405Z
LAST-MODIFIED:20230315T212405Z
UID:9778-1684663200-1684674000@cffamilyconnection.org
SUMMARY:Great Strides 2023 - Rochester
DESCRIPTION:
URL:https://cffamilyconnection.org/event/great-strides-2023-rochester/
LOCATION:Genesee Valley Park – Roundhouse Shelter\, Moore Road\, Rochester\, NY\, 14620\, United States
CATEGORIES:CF Foundation,CFF Fund Raising
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230427T180000
DTEND;TZID=America/New_York:20230427T220000
DTSTAMP:20260421T183141
CREATED:20230403T003327Z
LAST-MODIFIED:20230403T003428Z
UID:10223-1682618400-1682632800@cffamilyconnection.org
SUMMARY:ResearchCon 2023 - Day 2
DESCRIPTION:Check our Announcement for details. \nCheck the ResearchCon 2023 page for a full schedule of sessions for both days and a link to registration. \nVea la página de registro de ResearchCon 2023 en español.
URL:https://cffamilyconnection.org/event/researchcon-2023-day-2/
LOCATION:NY
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230426T180000
DTEND;TZID=America/New_York:20230426T220000
DTSTAMP:20260421T183141
CREATED:20230315T214029Z
LAST-MODIFIED:20230403T002900Z
UID:9786-1682532000-1682546400@cffamilyconnection.org
SUMMARY:ResearchCon 2023 - Day 1
DESCRIPTION:Check our Announcement for details. \nCheck the ResearchCon 2023 page for a full schedule of sessions for both days and a link to registration. \nVea la página de registro de ResearchCon 2023 en español. \n  \n 
URL:https://cffamilyconnection.org/event/researchcon-2023/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230418T190000
DTEND;TZID=America/New_York:20230418T203000
DTSTAMP:20260421T183141
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230412T190000
DTEND;TZID=America/New_York:20230412T201500
DTSTAMP:20260421T183141
CREATED:20230330T010115Z
LAST-MODIFIED:20230330T010115Z
UID:10211-1681326000-1681330500@cffamilyconnection.org
SUMMARY:Life Without Modulators Small Group Discussion
DESCRIPTION:An announcement from the Cystic Fibrosis Foundation: \nWhile many are celebrating the progression of CFTR modulators (Trikafta®\, Symdeko®\, Kalydeco® and Orkambi®)\, others are waiting for their “wonder drug.” To support the members of the CF community who are not benefiting from a modulator\, the CF Foundation is hosting a small group discussion to share experiences around Life Without Modulators. \nThis discussion is for adults with CF who are not eligible for or not benefiting from a CFTR modulator. \nDiscussions will be peer-led with one or two CF Foundation staff present during the conversations and can assist as needed. Please note this is not a support group facilitated by a mental health professional. \nThe Life Without Modulators discussion will take place for 75 minutes\, on Wednesday\, April 12 from 7-8:15 p.m. EST. \nClick Here to Register for Small Group Discussion \nBy registering\, you agree that you understand the CF Foundation will handle your information as described in its Privacy Policy. \nFor any questions\, please email Kelsey Logan (klogan@cff.org) or Gillian Mocek (gmocek@cff.org). \n 
URL:https://cffamilyconnection.org/event/life-without-modulators-small-group-discussion/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221105T170000
DTEND;TZID=America/New_York:20221105T220000
DTSTAMP:20260421T183141
CREATED:20220109T202608Z
LAST-MODIFIED:20220109T202608Z
UID:5681-1667667600-1667685600@cffamilyconnection.org
SUMMARY:Breath of Life Gala
DESCRIPTION:Details will be added as they become available.
URL:https://cffamilyconnection.org/event/breath-of-life-gala/
LOCATION:NY
CATEGORIES:CF Foundation,CFF Fund Raising
ORGANIZER;CN="CFF Western NY Chapter":MAILTO:pschwarzweller@cff.org
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