Cystic Fibrosis Family Connection

NACFC 2024 Highlights Webinar
2024-11-12 19:00 - 21:00 (America/New_York) | On-line Webinar
From the Cystic Fibrosis Foundation:
Interested 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.
REGISTER
Researchers 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.
Can’t attend live? Register and we will send you a recording after the event.
[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.
¿No puede asistir en vivo? Inscríbase y le enviaremos una grabación después del evento.]

Living with CF Golf Tournament 2024
2024-09-07 08:30 - 13:00 | Southern Meadows Golf Club, 1025 Rush Scottsville Road, Rush, NY, 14543, United States
September 7
@
8:30 am
–
1:00 pm
Happy 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.
Costs 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).
The 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.
The 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.
Want 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.
NOTE: 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.

Southern Meadows Golf Club

1025 Rush Scottsville Road

Rush,
NY
14543
United States

+ Google Map

Add to calendar

Google Calendar

iCalendar

Outlook 365

Outlook Live

Family Day 2024

Family Day 2024
2024-08-04 13:00 - 17:00 | Wickham Farms, 1315 Sweets Corners Rd, Penfield, NY, 14526, United States
August 4
@
1:00 pm
–
5:00 pm
CFFC 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.
Admission 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!
We 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.
CFFC 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.
To 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.

DATE: Sunday August 4, 2024
TIME: 1:00PM – 5:00PM
ORGANIZER: Cystic Fibrosis Family Connection
COST: FREE!

Add to calendar

Google Calendar

iCalendar

Outlook 365

Outlook Live

Rochester Great Strides 2024

Living with CF Golf Tournament 2024

Rochester Great Strides 2024
2024-05-19 10:00 - 13:00 | Genesee Valley Park – Roundhouse Shelter, Moore Road, Rochester, NY, 14620, United States
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.
Register Here

ResearchCon 2024 - Day 2
2024-05-01 18:00 | On-line Webinar
The invitation from the Cystic Fibrosis Foundation:
You 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.
ResearchCon features information sessions, roundtables, and social opportunities like:

Social chat time with other parents of people with CF
A genetics counselor, researcher, and community members presenting on the latest information on genetic therapies research followed by a Q&A
A clinical trials research coordinator and community members sharing their expertise and experiences with clinical trials

REGISTER HERE
You can check out the schedule and session options here: ResearchCon 2024 Schedule

ResearchCon 2024 - Day 1
2024-04-30 18:00 - 22:00 | On-line Webinar

Small Group Discussion - Body Image
2024-04-11 19:00 - 21:00 | On-line Webinar
The Cystic Fibrosis Foundation has shared the following announcement for an on-line discussion around body image.

Adults 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.
If you have a loved one with CF who could benefit from this discussion, please forward this information to them.

Register for Small Group Discussion on Body Image

Discussions 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.
By registering for a small group discussion, you agree that you understand the CF Foundation will handle your information as described in its Privacy Policy.
Please also review the Event Conduct Guide. By registering for or attending any CF Foundation event, you agree to follow this guidance.
For any questions, please email Kelsey Logan (klogan@cff.org).

Life Without Modulators Small Group Discussion
2024-03-06 19:00 - 21:00 | On-line Webinar
The Cystic Fibrosis Foundation has issued the following invitation to “Life Without Modulators Small Group Discussion.”
While 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.
This discussion is for:

Adults with CF who are not eligible for or not benefiting from a CFTR modulator
Parents of children with CF who are not eligible for or not benefiting from a CFTR modulator*.

* Please note, this discussion is not intended for parents of children with CF who are ineligible for CFTR modulators due to age restrictions.
Discussions 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.
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.
Please also review the Event Conduct Guide. By registering for or attending any CF Foundation event, you agree to follow this guidance.
For any questions, please email Kelsey Logan (klogan@cff.org).

WNY Annual Meeting & Awards Celebration
2024-02-28 17:30 - 20:00 | Pane Vino on the Avenue, 3400 Monroe Ave, Rochester, NY, 14618, United States
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

Register Here

BreatheCon 2024 - Day 2
2024-02-10 13:30 - 18:15 | On-line Webinar
From the Cystic Fibrosis Foundation:

On 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!
* BreatheCon sessions on Friday, February 9th, will be accessible in Spanish.
View the schedule and register here.

BreatheCon 2024 - Day 1
2024-02-09 18:30 - 22:30 | On-line Webinar

Rochester's Finest 2023
2023-10-19 18:00 - 21:00 | Casa Larga Vineyard, 2287 Turk Hill Road, Fairport, NY, 14450, United States
From Cystic Fibrosis Foundation Western NY Chapter:
Rochester’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.
For complete information, go to https://finest.cff.org/rochester

Webinar: Getting Older and Wiser: The Complexities of Ageing with Cystic Fibrosis
2023-09-25 19:00 | 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
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
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
Details will be added as they become available.
