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X-WR-CALDESC:Events for Cystic Fibrosis Family Connection
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DTSTART;TZID=America/New_York:20250606T173000
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UID:12365-1749231000-1749249000@cffamilyconnection.org
SUMMARY:ResearchCon 2025
DESCRIPTION:The announcement from the Cystic Fibrosis Foundation: \nJoin us at ResearchCon May 6! Everyone in the cystic fibrosis community is invited to this one-day\, virtual event to discuss the latest in CF-related science\, research\, clinical care\, and the lived experience alongside others living with and studying the disease. \nThis event will cover critical topics directly shaped by your feedback\, including gastrointestinal complications\, advancements in CF-related nutrition\, common mental health challenges\, and key differences between Trikafta and Alyftrek. \nPlus\, hear leading CF clinicians and researchers discussing topics like prenatal Trikafta use in CF carriers\, current clinical trials\, and the current state of gene therapy research. \nDuring the event\, you will also have the opportunity to ask deeper questions and interact directly with leading clinicians and researchers shaping the future of CF treatment and care. We can’t wait to see you there! \nRegister for ResearchCon \nThe registration page contains descriptions of the sessions and a detailed schedule.
URL:https://cffamilyconnection.org/event/researchcon-2025/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
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DTSTART;TZID=America/New_York:20250612T110000
DTEND;TZID=America/New_York:20250612T190000
DTSTAMP:20260422T181816
CREATED:20250125T025113Z
LAST-MODIFIED:20250125T025308Z
UID:12255-1749726000-1749754800@cffamilyconnection.org
SUMMARY:ROC 65 Roses Golf Tournament - 2025
DESCRIPTION:From the Western NY Chapter of the Cystic Fibrosis Foundation: \nOn behalf of Michael Sellars\, President of ROC CF Awareness\, Inc\, and Volunteer Leadership Chair for the inaugural Rochester 65 Roses Golf Tournament\, I am thrilled to announce that the Cystic Fibrosis Foundation in Rochester\, NY\, is adding a Golf Tournament to our events calendar!  Past participation in Michael’s ROC CF Awareness tournament is greatly appreciated and we are hopeful support of the CF community will continue with your involvement with this new event.  \nSome details regarding the ROC 65 Roses Golf Tournament: \n                Date:                     Thursday\, June 12\, 2025 \n                Time:                    11:00am Registration and Lunch \n                                                Noon – Shotgun start \n                Location:            Ravenwood Golf Club\, Victor\, NY \nTo learn more about the event\, sponsorships and to register\, visit the website: https://events.cff.org/ROC65RosesGolf \nIf you have any questions\, please give me a call at (585) 924-0319. \nWe hope to see you at Ravenwood on June 12th! \nUntil It’s Done! \nPatty Schwarzweller
URL:https://cffamilyconnection.org/event/roc-65-roses-golf-tournament-2025/
LOCATION:Ravenwood Golf Club\, 929 Lynaugh Rd\, Victor\, NY\, 14564\, United States
CATEGORIES:CF Foundation,CFF Fund Raising
ORGANIZER;CN="CFF Western NY Chapter":MAILTO:pschwarzweller@cff.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250803T100000
DTEND;TZID=America/New_York:20250803T140000
DTSTAMP:20260422T181816
CREATED:20250427T214826Z
LAST-MODIFIED:20250427T215158Z
UID:12454-1754215200-1754229600@cffamilyconnection.org
SUMMARY:CFFC Family Day 2025
DESCRIPTION:The 2025 version of CFFC Family Day will be held on Sunday\, August 3rd. We will be returning to Wickham Farms in Penfield. Trying to balance summertime demands\, we have reserved the Event Barn from 10:00AM to 2:00PM. \nAdmission is FREE for everyone registered through CFFC. By “everyone\,” we mean individuals covered by the Rochester CF Center: those living with CF\, their families\, their extended support network and caregivers. \nWe ask that you register by July 29th. For full details and registration\, check our post: Join Us for Family Day 2025
URL:https://cffamilyconnection.org/event/cffc-family-day-2025/
LOCATION:Wickham Farms\, 1315 Sweets Corners Rd\, Penfield\, NY\, 14526\, United States
CATEGORIES:CFFC,Education
ORGANIZER;CN="Cystic Fibrosis Family Connection":MAILTO:info@cffamilyconnection.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250913T080000
DTEND;TZID=America/New_York:20250913T130000
DTSTAMP:20260422T181816
CREATED:20250319T192629Z
LAST-MODIFIED:20250504T163225Z
UID:12345-1757750400-1757768400@cffamilyconnection.org
SUMMARY:Living with CF Golf Tournament 2025
DESCRIPTION:For full details\, go to our Golf for a Good Cause post. You can register online from the Golf for a Good Cause post\, or you can mail the entry form in the Living with CF Golf Brochure_2025.
URL:https://cffamilyconnection.org/event/living-with-cf-golf-tournament-2025/
LOCATION:Southern Meadows Golf Club\, 1025 Rush Scottsville Road\, Rush\, NY\, 14543\, United States
CATEGORIES:CFFC Fund Raising
ORGANIZER;CN="Cystic Fibrosis Family Connection":MAILTO:info@cffamilyconnection.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260912T083000
DTEND;TZID=America/New_York:20260912T130000
DTSTAMP:20260422T181816
CREATED:20260418T034604Z
LAST-MODIFIED:20260418T034604Z
UID:13225-1789201800-1789218000@cffamilyconnection.org
SUMMARY:Living with CF Golf Tournament 2026
DESCRIPTION:Join in the fun at the Living with CF Golf Tournament. See the key elements of the tournament and an on-line entry form at Tee Up for CFFC. You can also get the details (with a mail-in entry) in the CFFC Golf Brochure_2026.
URL:https://cffamilyconnection.org/event/living-with-cf-golf-tournament-2026/
LOCATION:Southern Meadows Golf Club\, 1025 Rush Scottsville Road\, Rush\, NY\, 14543\, United States
CATEGORIES:CFFC Fund Raising
ORGANIZER;CN="Cystic Fibrosis Family Connection":MAILTO:info@cffamilyconnection.org
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