Cystic Fibrosis Family Connection

Webinar: Getting Older and Wiser: The Complexities of Ageing with Cystic Fibrosis
2023-09-25 19:00 (America/New_York) | On-line Webinar
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:
Are 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.
When: September 25 from 7-8 pm ETWhere: Zoom
Dr. 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.
Key Points of Discussion:

The shifting focus from pediatric care to understanding ageing with CF
Exploring the impact of emerging complications on older CF patients
Addressing gaps in care and identifying barriers to optimal healthcare
Future directions for research and implications for CF Canada’s registry

Register for the event today: Getting older and wiser: the complexities of ageing with cystic fibrosis
Dr. 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.
For inquiries, or to submit questions in advance to Dr. Stephenson, please contact hello@cysticfibrosis.ca.

CFFC Living with CF Golf Tournament 2023
2023-09-09 08:30 - 13:00 | Southern Meadows Golf Club, 1025 Rush Scottsville Road, Rush, NY, 14543, United States
The Living with CF Golf Tournament returns to Southern Meadows Golf Club on Saturday, September 9, 2023.
Details, including new payment options and online registration, are presented in Announcing Living with CF Golf Tournament 2023.
You can also get the details and a paper entry form by downloading the CFFC Golf Brochure_2023

You can now submit your registration electronically using the form below. Visit our Donate page for payment options.

Swinging Fore a Cure Golf Tournament 2023
2023-07-29 12:00 - 18:00 | Mill Creek Golf Club, 128 Cedars Avenue, Churchville, NY, 14428, United States
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.

CFF NextBreath 2023 Day 2
2023-06-14 18:00 - 20:30 | On-line Webinar
NextBreath is a virtual session presented by the Cystic Fibrosis Foundation. From the CFF website:
NextBreath 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.
Each 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:
You’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.
Check the NextBreath page for details about sessions and a link to registration.

CFF NextBreath 2023 Day 1
2023-06-13 06:00 - 20:30 | On-line Webinar
NextBreath is a virtual session presented by the Cystic Fibrosis Foundation. From the CFF website:
NextBreath 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.
Each day has a specific focus. The theme for Day 1 is “[t]he loss of physical abilities, the retention of resilience.” Per CFF:
Join 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.
Check the NextBreath page for details about sessions and a link to registration.

2023 AbbVie CF Scholarship Deadline
2023-05-24 10:00 - 11:00 | NY
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.

Great Strides 2023 - Rochester
2023-05-21 10:00 - 13:00 | Genesee Valley Park – Roundhouse Shelter, Moore Road, Rochester, NY, 14620, United States

ResearchCon 2023 - Day 2
2023-04-27 18:00 - 22:00 | NY
Check our Announcement for details.
Check the ResearchCon 2023 page for a full schedule of sessions for both days and a link to registration.
Vea la página de registro de ResearchCon 2023 en español.

ResearchCon 2023 - Day 1
2023-04-26 18:00 - 22:00 | On-line Webinar

43rd Annual Kit Taylor Memorial Lecture
2023-04-18 19:00 - 20:30 | Golisano Children’s Hospital, 601 Elmwood Avenue, Rochester, NY, 14620, United States
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.
As 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:
Parking passes for the Strong garage will be provided to all attendees.

Life Without Modulators Small Group Discussion
2023-04-12 19:00 - 20:15 | On-line Webinar
An announcement from the Cystic Fibrosis Foundation:
While 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.
This discussion is for adults with CF who are not eligible for or not benefiting from a CFTR modulator.
Discussions 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.
The Life Without Modulators discussion will take place for 75 minutes, on Wednesday, April 12 from 7-8:15 p.m. EST.
Click Here to Register for Small Group Discussion
By registering, you agree that you understand the CF Foundation will handle your information as described in its Privacy Policy.
For any questions, please email Kelsey Logan (klogan@cff.org) or Gillian Mocek (gmocek@cff.org).

Breath of Life Gala
2022-11-05 17:00 - 22:00 | NY
Details will be added as they become available.
