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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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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241112T190000
DTEND;TZID=America/New_York:20241112T210000
DTSTAMP:20260422T183816
CREATED:20241024T203740Z
LAST-MODIFIED:20241024T203740Z
UID:12047-1731438000-1731445200@cffamilyconnection.org
SUMMARY:NACFC 2024 Highlights Webinar
DESCRIPTION:From the Cystic Fibrosis Foundation: \nInterested in learning about the latest cystic fibrosis research and care highlights from the North American Cystic Fibrosis Conference (NACFC)? Register for our live webinar November 12 at 7 p.m. ET to hear key takeaways from this year’s conference and have an opportunity to ask the experts your questions. \nREGISTER \nResearchers and clinicians gather every year at the North American Cystic Fibrosis Conference to discuss the latest developments in cystic fibrosis research and care. We invite everyone to learn about these developments at the NACFC Highlights Webinar on November 12\, 7-8 p.m. ET. The event will include an option to listen to a live Spanish translation. We will talk about the latest research and care news from NACFC\, and CF researchers will answer your questions. \nCan’t attend live? Register and we will send you a recording after the event. \n[Investigadores y especialistas médicos se congregan cada año en la Conferencia de Fibrosis Quística de América del Norte (NACFC en inglés) para debatir los últimos avances en la investigación y la atención de la fibrosis quística. Invitamos a todos a aprender a informarse sobre estos avances en el seminario web de puntos destacados de la NACFC en el 12 de noviembre\, de 7 a 8 p.m.\, hora del este. El evento incluirá una opción para escuchar la interpretación en español. Hablaremos de las últimas novedades en investigación y atención de la NACFC\, y los investigadores de la FQ responderán sus preguntas. \n¿No puede asistir en vivo? Inscríbase y le enviaremos una grabación después del evento.]
URL:https://cffamilyconnection.org/event/nacfc-2024-highlights-webinar/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250122T200000
DTEND;TZID=America/New_York:20250122T230000
DTSTAMP:20260422T183816
CREATED:20241220T224859Z
LAST-MODIFIED:20241220T224859Z
UID:12166-1737576000-1737586800@cffamilyconnection.org
SUMMARY:Cystic Fibrosis Foundation Annual Meeting
DESCRIPTION:The Cystic Fibrosis Foundation has extended the following invitation: \nJoin us for an inspiring conversation with Michael Boyle\, MD\, President and CEO\, and Irena Barisic\, Executive VP and Chief Operating & Financial Officer\, as they share the Foundation’s vision for 2025. \nAfter opening remarks\, leaders from across the Foundation will be on hand to answer your questions. This is your conversation\, so bring the questions that matter most to you. \nRegister today for this energizing community conversation! \nRESERVE YOUR SPOT TODAY
URL:https://cffamilyconnection.org/event/cystic-fibrosis-foundation-annual-meeting/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250207T180000
DTEND;TZID=America/New_York:20250207T220000
DTSTAMP:20260422T183816
CREATED:20250125T023237Z
LAST-MODIFIED:20250125T023237Z
UID:12251-1738951200-1738965600@cffamilyconnection.org
SUMMARY:BreatheCon 2025 - Day 1
DESCRIPTION:From the Cystic Fibrosis Foundation: \nWhether you were diagnosed with cystic fibrosis at birth or recently received a diagnosis\, there’s a spot for you at BreatheCon! This two-day virtual experience offers opportunities to share stories and perspectives with people who truly “get it.” Attendees will have access to panels\, group chats\, and social events\, including a game night and karaoke. Register to join us February 7-8 to get to know and have fun with other adults living with CF!  \nSee the details of the event including registration: BreatheCon 2025
URL:https://cffamilyconnection.org/event/breathecon-2025-day-1/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250208T133000
DTEND;TZID=America/New_York:20250208T190000
DTSTAMP:20260422T183816
CREATED:20250125T023718Z
LAST-MODIFIED:20250125T023718Z
UID:12253-1739021400-1739041200@cffamilyconnection.org
SUMMARY:BreatheCon 2025 - Day 2
DESCRIPTION:From the Cystic Fibrosis Foundation: \nWhether you were diagnosed with cystic fibrosis at birth or recently received a diagnosis\, there’s a spot for you at BreatheCon! This two-day virtual experience offers opportunities to share stories and perspectives with people who truly “get it.” Attendees will have access to panels\, group chats\, and social events\, including a game night and karaoke. Register to join us February 7-8 to get to know and have fun with other adults living with CF!  \nSee the details of the event including registration: BreatheCon 2025
URL:https://cffamilyconnection.org/event/breathecon-2025-day-2/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250225T190000
DTEND;TZID=America/New_York:20250225T200000
DTSTAMP:20260422T183816
CREATED:20250114T020144Z
LAST-MODIFIED:20250114T020144Z
UID:12203-1740510000-1740513600@cffamilyconnection.org
SUMMARY:CF Circle - Sexual Health
DESCRIPTION:Description from Cystic Fibrosis Foundation:\n\nThis small group discussion is for adults with CF and offers a supportive environment to connect with others who share similar experiences. There is no set agenda in these groups\, but topics may include discussion of hormones\, incontinence and UTIs\, side effects of medication\, or menopause. Join the conversation to engage in meaningful discussions\, exchange insights\, and build connections with others in the CF community.\n\nIf you have any trouble registering or have any questions\, please contact Rachel at rhershberg@cff.org\n\nRegister\n\nLearn more about CF Circles here.
URL:https://cffamilyconnection.org/event/cf-circle-sexual-health/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250227T180000
DTEND;TZID=America/New_York:20250227T210000
DTSTAMP:20260422T183816
CREATED:20250114T224646Z
LAST-MODIFIED:20250114T224646Z
UID:12228-1740679200-1740690000@cffamilyconnection.org
SUMMARY:WNYCFF Rochester Annual Meeting 2025
DESCRIPTION:Here’s the announcement from the Western New York Chapter of the Cystic Fibrosis Foundation: \nCelebrate the moment with us at the Western New York Chapter of the Cystic Fibrosis Foundation’s Buffalo and Rochester annual meetings\, which will be held on Thursday\, February 27\, 2025 in Rochester and Thursday\, March 6\, 2025 in Buffalo.\n\nDuring this annual gathering\, we will reflect on the extraordinary achievements we’ve made as a community in 2024 and celebrate our dedicated volunteers and sponsors who supported us in our mission to cure cystic fibrosis.\n\nREGISTER\n\nFor more information\, contact Sara Nelson (snelson@cff.org)
URL:https://cffamilyconnection.org/event/wnycff-rochester-annual-meeting-2025/
LOCATION:Pane Vino on the Avenue\, 3400 Monroe Ave\, Rochester\, NY\, 14618\, United States
CATEGORIES:CF Foundation,Education
ORGANIZER;CN="CFF Western NY Chapter":MAILTO:pschwarzweller@cff.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250325T190000
DTEND;TZID=America/New_York:20250325T200000
DTSTAMP:20260422T183816
CREATED:20250114T021100Z
LAST-MODIFIED:20250114T021117Z
UID:12206-1742929200-1742932800@cffamilyconnection.org
SUMMARY:CF Circle - Living Longer With CF
DESCRIPTION:Description from Cystic Fibrosis Foundation: \nThis small group discussion is for adults with CF 40+ and offers a supportive environment to connect with others who share similar experiences. Previous topic discussions have ranged from navigating changes in health to work transitions and redefining your expectations of aging. Join the conversation to share insights\, foster connections\, and explore what aging with CF means for you. \nBreakout groups will be divided by age in the following way: 40-49\, 50-59\, 60-69\, 70+ \nIf you have any trouble registering or have any questions\, please contact Rachel at rhershberg@cff.org \nRegister \nLearn more about CF Circles here.
URL:https://cffamilyconnection.org/event/cf-circle-living-longer-with-cf/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250422T180000
DTEND;TZID=America/New_York:20250422T200000
DTSTAMP:20260422T183816
CREATED:20250314T155632Z
LAST-MODIFIED:20250314T155632Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250518T100000
DTEND;TZID=America/New_York:20250518T130000
DTSTAMP:20260422T183816
CREATED:20250114T223502Z
LAST-MODIFIED:20250114T223502Z
UID:12226-1747562400-1747573200@cffamilyconnection.org
SUMMARY:Great Strides - Rochester 2025
DESCRIPTION:Check out the event page for information on the 2025 Great Strides at Genesee Valley Park on May 18th. \nGreat Strides Rochester 2025
URL:https://cffamilyconnection.org/event/great-strides-rochester-2025/
LOCATION:Genesee Valley Park – Roundhouse Shelter\, Moore Road\, Rochester\, NY\, 14620\, United States
CATEGORIES:CF Foundation,CFF Fund Raising
ORGANIZER;CN="CFF Western NY Chapter":MAILTO:pschwarzweller@cff.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250606T173000
DTEND;TZID=America/New_York:20250606T223000
DTSTAMP:20260422T183816
CREATED:20250408T140418Z
LAST-MODIFIED:20250408T140418Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250612T110000
DTEND;TZID=America/New_York:20250612T190000
DTSTAMP:20260422T183816
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250803T100000
DTEND;TZID=America/New_York:20250803T140000
DTSTAMP:20260422T183816
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250913T080000
DTEND;TZID=America/New_York:20250913T130000
DTSTAMP:20260422T183816
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260912T083000
DTEND;TZID=America/New_York:20260912T130000
DTSTAMP:20260422T183816
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
END:VEVENT
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