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X-WR-CALDESC:Events for Cystic Fibrosis Family Connection
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250913T080000
DTEND;TZID=America/New_York:20250913T130000
DTSTAMP:20260421T151458
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:20250803T100000
DTEND;TZID=America/New_York:20250803T140000
DTSTAMP:20260421T151458
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:20250612T110000
DTEND;TZID=America/New_York:20250612T190000
DTSTAMP:20260421T151458
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:20250606T173000
DTEND;TZID=America/New_York:20250606T223000
DTSTAMP:20260421T151458
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:20250518T100000
DTEND;TZID=America/New_York:20250518T130000
DTSTAMP:20260421T151458
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:20250422T180000
DTEND;TZID=America/New_York:20250422T200000
DTSTAMP:20260421T151458
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:20250325T190000
DTEND;TZID=America/New_York:20250325T200000
DTSTAMP:20260421T151458
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:20250227T180000
DTEND;TZID=America/New_York:20250227T210000
DTSTAMP:20260421T151458
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:20250225T190000
DTEND;TZID=America/New_York:20250225T200000
DTSTAMP:20260421T151458
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:20250208T133000
DTEND;TZID=America/New_York:20250208T190000
DTSTAMP:20260421T151458
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:20250207T180000
DTEND;TZID=America/New_York:20250207T220000
DTSTAMP:20260421T151458
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:20250122T200000
DTEND;TZID=America/New_York:20250122T230000
DTSTAMP:20260421T151458
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:20241112T190000
DTEND;TZID=America/New_York:20241112T210000
DTSTAMP:20260421T151458
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:20240907T083000
DTEND;TZID=America/New_York:20240907T130000
DTSTAMP:20260421T151458
CREATED:20240519T113005Z
LAST-MODIFIED:20240522T201552Z
UID:11450-1725697800-1725714000@cffamilyconnection.org
SUMMARY:Living with CF Golf Tournament 2024
DESCRIPTION:September 7\n	  @\n8:30 am\n	  –\n1:00 pm \nHappy 2024! Celebrate the end of summer\, while raising funds for CFFC programs\, by playing in the Living with CF Golf tournament. This year’s edition will be held on Saturday\, September 7th. We will once again be hosted by Southern Meadows Golf Club in Rush\, NY. Get all the details in the Living with CF Golf Brochure_2024. \nCosts have increased but we are keeping the entry fees the same ($70 per player or $250 for a foursome). To match the funds raised in prior years\, we’re looking for your help by recruiting additional players. Your entry fee can be paid by check\, PayPal or Venmo (see our Donations page for details). \nThe primary purpose of the tournament is fund raising while having fun\, but you also have the opportunity to win prizes. Low scores will earn trips to the prize table. We also have prizes for closest to the pin on two par 3 holes. And hone your accuracy so you can grab one of the 4 hole-in-one prizes. \nThe day begins at 8:30 with coffee and snacks at check-in. The shotgun start at 9:00 gets the action rolling. The event wraps up with a grilled filet lunch followed by awards. \nWant to join in the festivities? You can complete the entry form in the Living with CF Golf Brochure_2024. Or you can save the stamp and fill out the online entry form below. \nNOTE: We ask for your email and telephone number so we can provide updates or contact you to clarify your entry. CFFC does not share this information with any other organization. \n\n	Southern Meadows Golf Club\n\n1025 Rush Scottsville Road\n		\n		Rush\,\n	NY\n	14543\n	United States\n\n\n	+ Google Map \n\n					\n						\n	 \n\n\n\n\n	\n	Add to calendar	\n		\n	\n \n\n\n	Google Calendar\n\n\n	iCalendar\n\n\n	Outlook 365\n\n\n	Outlook Live\n\n\n\n\n\n\n				Family Day 2024
URL:https://cffamilyconnection.org/event/living-with-cf-golf-tournament-2024/
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:20240804T130000
DTEND;TZID=America/New_York:20240804T170000
DTSTAMP:20260421T151458
CREATED:20240422T185059Z
LAST-MODIFIED:20240629T150450Z
UID:11292-1722776400-1722790800@cffamilyconnection.org
SUMMARY:Family Day 2024
DESCRIPTION:August 4\n	  @\n1:00 pm\n	  –\n5:00 pm \nCFFC is pleased to announce the return to Family Day. Please join us with your family and supporters for an afternoon connecting\, learning and having fun with our one-of-a-kind CF community. \nAdmission to Wickham Farms for CFFC Family Day is FREE to everyone associated with the Rochester NY CF Center – individuals living with CF\, their families and supporters\, and CF caregivers. Admission includes: bounce pillow\, corn pit\, lawn games\, playground\, tractor rides\, farm animals\, food and beverages\, and more! \nWe are working to extend our tradition of mixing education with family fun. We plan to set up space for one-on-one conversations with peers from our community on key CF topics. We are also inviting corporate sponsors to discuss their latest products. \nCFFC will follow CFF infection control guidelines. We will provide masks\, hand sanitizers and identification for those who have CF. We have reserved the barn for exclusive use by CFFC to provide a space away from the other visitors. \nTo help us with planning and simplify admission\, we are asking attendees to preregister. Please complete and submit the form below by Monday\, July 29th. Your email address will be used to confirm your registration and provide event updates. \n\n																							 \n\n			 \nDATE: Sunday August 4\, 2024 \nTIME: 1:00PM – 5:00PM \nORGANIZER: Cystic Fibrosis Family Connection \nCOST: FREE! \n\n	\n	Add to calendar	\n		\n	\n \n\n\n	Google Calendar\n\n\n	iCalendar\n\n\n	Outlook 365\n\n\n	Outlook Live\n\n\n\n\n\n\n				Rochester Great Strides 2024	\n\n\n	\n		Living with CF Golf Tournament 2024
URL:https://cffamilyconnection.org/event/family-day-2024/
LOCATION:Wickham Farms\, 1315 Sweets Corners Rd\, Penfield\, NY\, 14526\, United States
CATEGORIES:CFFC
ORGANIZER;CN="Cystic Fibrosis Family Connection":MAILTO:info@cffamilyconnection.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240519T100000
DTEND;TZID=America/New_York:20240519T130000
DTSTAMP:20260421T151458
CREATED:20240115T225425Z
LAST-MODIFIED:20240115T225425Z
UID:11083-1716112800-1716123600@cffamilyconnection.org
SUMMARY:Rochester Great Strides 2024
DESCRIPTION:Great Strides is the Cystic Fibrosis Foundation’s largest national fundraiser that brings together the community to raise awareness and funds towards our mission of finding a cure for all those living with cystic fibrosis. Registration is open! Join us in Rochester on Sunday\, May 19. \nRegister Here
URL:https://cffamilyconnection.org/event/rochester-great-strides-2024/
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:20240501T180000
DTEND;TZID=America/New_York:20240501T180000
DTSTAMP:20260421T151458
CREATED:20240330T004450Z
LAST-MODIFIED:20240330T004528Z
UID:11236-1714586400-1714586400@cffamilyconnection.org
SUMMARY:ResearchCon 2024 - Day 2
DESCRIPTION:The invitation from the Cystic Fibrosis Foundation: \nYou are invited to join the 6th annual ResearchCon on April 30-May 1\, where you can interact virtually with researchers and clinicians and develop a deeper understanding of CF-related research and science topics. Past attendees have said that ResearchCon helps them better advocate for the changing health needs of their loved ones and leads to feeling more connected to the CF community. \nResearchCon features information sessions\, roundtables\, and social opportunities like: \n\nSocial chat time with other parents of people with CF\nA genetics counselor\, researcher\, and community members presenting on the latest information on genetic therapies research followed by a Q&A\nA clinical trials research coordinator and community members sharing their expertise and experiences with clinical trials\n\nREGISTER HERE \nYou can check out the schedule and session options here: ResearchCon 2024 Schedule
URL:https://cffamilyconnection.org/event/researchcon-2024-day-2/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240430T180000
DTEND;TZID=America/New_York:20240430T220000
DTSTAMP:20260421T151458
CREATED:20240330T003614Z
LAST-MODIFIED:20240330T003825Z
UID:11226-1714500000-1714514400@cffamilyconnection.org
SUMMARY:ResearchCon 2024 - Day 1
DESCRIPTION:The invitation from the Cystic Fibrosis Foundation: \nYou are invited to join the 6th annual ResearchCon on April 30-May 1\, where you can interact virtually with researchers and clinicians and develop a deeper understanding of CF-related research and science topics. Past attendees have said that ResearchCon helps them better advocate for the changing health needs of their loved ones and leads to feeling more connected to the CF community. \nResearchCon features information sessions\, roundtables\, and social opportunities like: \n\nSocial chat time with other parents of people with CF\nA genetics counselor\, researcher\, and community members presenting on the latest information on genetic therapies research followed by a Q&A\nA clinical trials research coordinator and community members sharing their expertise and experiences with clinical trials\n\nREGISTER HERE \nYou can check out the schedule and session options here:  ResearchCon 2024 Schedule
URL:https://cffamilyconnection.org/event/researchcon-2024-day-1/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240411T190000
DTEND;TZID=America/New_York:20240411T210000
DTSTAMP:20260421T151458
CREATED:20240319T002344Z
LAST-MODIFIED:20240319T002357Z
UID:11199-1712862000-1712869200@cffamilyconnection.org
SUMMARY:Small Group Discussion - Body Image
DESCRIPTION:The Cystic Fibrosis Foundation has shared the following announcement for an on-line discussion around body image. \n\nAdults with CF are invited to join an open conversation around body image. Based on BreatheCon 2024 feedback and community requests\, the CF Foundation is offering a small group discussion where adults with CF can share experiences with each other around their unique challenges surrounding weight fluctuations\, surgery scars\, or other physical manifestations due to CF or treatments.  \nIf you have a loved one with CF who could benefit from this discussion\, please forward this information to them. \n\nRegister for Small Group Discussion on Body Image \n\nDiscussions will be peer-led with CF Foundation staff present to assist with technology. Please note these are not support groups facilitated by a mental health professional. \nBy registering for a small group discussion\, you agree that you understand the CF Foundation will handle your information as described in its Privacy Policy. \nPlease also review the Event Conduct Guide. By registering for or attending any CF Foundation event\, you agree to follow this guidance. \nFor any questions\, please email Kelsey Logan (klogan@cff.org).
URL:https://cffamilyconnection.org/event/small-group-discussion-body-image/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240306T190000
DTEND;TZID=America/New_York:20240306T210000
DTSTAMP:20260421T151458
CREATED:20240223T000745Z
LAST-MODIFIED:20240223T000745Z
UID:11120-1709751600-1709758800@cffamilyconnection.org
SUMMARY:Life Without Modulators Small Group Discussion
DESCRIPTION:The Cystic Fibrosis Foundation has issued the following invitation to “Life Without Modulators Small Group Discussion.” \nWhile many are celebrating the progression of CFTR modulators (Trikafta®\, Symdeko®\, Kalydeco® and Orkambi®)\, others are waiting for the next highly effective treatment. 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: \n\nAdults with CF who are not eligible for or not benefiting from a CFTR modulator\nParents of children with CF who are not eligible for or not benefiting from a CFTR modulator*.\n\n* Please note\, this discussion is not intended for parents of children with CF who are ineligible for CFTR modulators  due to age restrictions. \nDiscussions will be peer-led with CF Foundation staff present to assist with technology. Please note this is not a support group facilitated by a mental health professional. \nRegister for Small Group Discussion \nBy registering\, you agree that you understand the CF Foundation will handle your information as described in its Privacy Policy. \nPlease also review the Event Conduct Guide. By registering for or attending any CF Foundation event\, you agree to follow this guidance. \nFor any questions\, please email Kelsey Logan (klogan@cff.org).
URL:https://cffamilyconnection.org/event/life-without-modulators-small-group-discussion-2/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240228T173000
DTEND;TZID=America/New_York:20240228T200000
DTSTAMP:20260421T151458
CREATED:20240115T224205Z
LAST-MODIFIED:20240115T224205Z
UID:11079-1709141400-1709150400@cffamilyconnection.org
SUMMARY:WNY Annual Meeting & Awards Celebration
DESCRIPTION:2023 was a great year for the Cystic Fibrosis Foundation – Western New York Chapter\, and now it’s time to celebrate! We invite you to join us as we honor our community leaders and find out what’s to come in 2024. Wednesday\, February 28\, 2024\, 5:30pm – Pane Vino on the Avenue\, Rochester\n\nRegister Here
URL:https://cffamilyconnection.org/event/wny-annual-meeting-awards-celebration/
LOCATION:Pane Vino on the Avenue\, 3400 Monroe Ave\, Rochester\, NY\, 14618\, United States
CATEGORIES:CF Foundation
ORGANIZER;CN="CFF Western NY Chapter":MAILTO:pschwarzweller@cff.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240210T133000
DTEND;TZID=America/New_York:20240210T181500
DTSTAMP:20260421T151458
CREATED:20240111T171106Z
LAST-MODIFIED:20240111T171106Z
UID:11059-1707571800-1707588900@cffamilyconnection.org
SUMMARY:BreatheCon 2024 - Day 2
DESCRIPTION:From the Cystic Fibrosis Foundation: \n\n\n\n\n\n\nOn Feb. 9 & 10\, 2024\, the Cystic Fibrosis Foundation will host BreatheCon\, a unique event for adults with cystic fibrosis to virtually gather with one another in a welcoming\, inclusive space where you can be your authentic self. No matter if you are seeking to learn from others\, share your CF journey\, or just want to socialize; all adults with CF are welcome to attend! \n* BreatheCon sessions on Friday\, February 9th\, will be accessible in Spanish. \nView the schedule and register here.
URL:https://cffamilyconnection.org/event/breathecon-2024-day-2/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240209T183000
DTEND;TZID=America/New_York:20240209T223000
DTSTAMP:20260421T151458
CREATED:20240111T170724Z
LAST-MODIFIED:20240111T170724Z
UID:11054-1707503400-1707517800@cffamilyconnection.org
SUMMARY:BreatheCon 2024 - Day 1
DESCRIPTION:From the Cystic Fibrosis Foundation: \n\n\n\n\n\n\nOn Feb. 9 & 10\, 2024\, the Cystic Fibrosis Foundation will host BreatheCon\, a unique event for adults with cystic fibrosis to virtually gather with one another in a welcoming\, inclusive space where you can be your authentic self. No matter if you are seeking to learn from others\, share your CF journey\, or just want to socialize; all adults with CF are welcome to attend! \n* BreatheCon sessions on Friday\, February 9th\, will be accessible in Spanish. \nView the schedule and register here.
URL:https://cffamilyconnection.org/event/breathecon-2024-day-1/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231019T180000
DTEND;TZID=America/New_York:20231019T210000
DTSTAMP:20260421T151458
CREATED:20231004T195639Z
LAST-MODIFIED:20231004T195639Z
UID:10875-1697738400-1697749200@cffamilyconnection.org
SUMMARY:Rochester's Finest 2023
DESCRIPTION:From Cystic Fibrosis Foundation Western NY Chapter: \nRochester’s Finest honorees represent the area’s most accomplished and innovative young leaders who commit to raise funds and awareness for the CF Foundation leading up to the Celebration in October. The chosen honorees exemplify leadership qualities\, are active in their communities\, and have excelled in business. Those selected are among the most prominent\, influential\, and successful young professionals in our region. \nFor complete information\, go to https://finest.cff.org/rochester
URL:https://cffamilyconnection.org/event/rochesters-finest-2023/
LOCATION:Casa Larga Vineyard\, 2287 Turk Hill Road\, Fairport\, NY\, 14450\, 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:20230925T190000
DTEND;TZID=America/New_York:20230925T190000
DTSTAMP:20260421T151458
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:20260421T151458
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:20260421T151458
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:20260421T151458
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:20260421T151458
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:20260421T151458
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
END:VCALENDAR