BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Cystic Fibrosis Family Connection - ECPv6.15.20//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:Cystic Fibrosis Family Connection X-ORIGINAL-URL:https://cffamilyconnection.org X-WR-CALDESC:Events for Cystic Fibrosis Family Connection REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:America/New_York BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20210314T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20211107T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20220313T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20221106T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20230312T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20231105T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20240310T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20241103T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20250309T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20251102T060000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/New_York:20241112T190000 DTEND;TZID=America/New_York:20241112T210000 DTSTAMP:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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/ 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:20260421T165213 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:20260421T165213 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/ CATEGORIES:CF Foundation,Education END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230426T180000 DTEND;TZID=America/New_York:20230426T220000 DTSTAMP:20260421T165213 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:20260421T165213 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:20260421T165213 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:20260421T165213 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/ CATEGORIES:CF Foundation,CFF Fund Raising ORGANIZER;CN="CFF Western NY Chapter":MAILTO:pschwarzweller@cff.org END:VEVENT END:VCALENDAR