CFF VLC 2022

Jul 23, 2022 ‐ Jul 24, 2022



Sessions

Pandemic-Proofing Your Event to Build Longevity and Ensure Success

Jul 23, 2022 2:30pm ‐ Jul 23, 2022 3:30pm

Identification: 15

Explore bright ideas and lessons learned from fundraising during a pandemic that can be used moving forward. When every roadblock seems to be in the way, how can your Themed event still pull in revenue? Learn how creatively reformatting events helps to bridge the gap between virtual and large in-person fundraising events to make them more accessible to people with CF.


Our CF Story: Embracing What Is While Striving for More

Jul 23, 2022 3:45pm ‐ Jul 23, 2022 4:45pm

Identification: 17

When you or a loved one is living with cystic fibrosis, acceptance is key to living a fulfilling life. The same can be said for any part of our lives — how do we accept the good with the bad of the present while we continue to evolve? Hear from two adults with CF as they reflect on life during the past two years and beyond.

Speaker(s):

Virtual Cocktail Reception iconVirtual Cocktail Reception

Preview Available

Virtual Cocktail Reception

Jul 23, 2022 5:15pm ‐ Jul 23, 2022 6:15pm

Identification: 19

Join us for a virtual cocktail reception with a mixologist, Alex Leahy! We will spend some time all together and then move into breakout rooms to get to know each other better.


VLC Celebration Dinner iconVLC Celebration Dinner

Preview Available

VLC Celebration Dinner

Jul 23, 2022 6:30pm ‐ Jul 23, 2022 8:30pm

Identification: 20

Mike Beatty, National Leadership Council Chair will welcome attendees to the celebration dinner where we will honor the winners of the Spirit of American Award, the Dream Big Award, the Alex Award, the Jena Award, and several prestigious corporate awards. Following the presentation of awards, Joe O'Donnell, chair of the Milestones III: Driven by a Dream Campaign, will close the dinner.

Speaker(s):

Mission Moment | Medical and Research Update: Key Priorities

Jul 24, 2022 9:00am ‐ Jul 24, 2022 10:35am

Identification: 22

Join Foundation President and CEO, Michael Boyle, MD, and other Foundation staff as they highlight the latest CF research and developments in our drug pipeline, discuss how our care model is evolving to meet changing needs, and provide an update on the Foundation’s Path to a Cure, our ambitious research initiative focused on developing treatments for the underlying cause of the disease for all people with CF and, ultimately, a cure.

Speaker(s):
  • Rob Ronnenberg, Project CF Spouse
  • Michael Boyle, MD, President and CEO, Cystic Fibrosis Foundation
  • A. Whitney Brown, MD, Senior Director of Clinical Affairs, Cystic Fibrosis Foundation
  • JP Clancy, MD, Senior Vice President of Clinical Research, Cystic Fibrosis Foundation
  • Steven M. Rowe, MD, MSPH, Executive Vice President and Chief Scientific Officer, Cystic Fibrosis Foundation

Board Chair & Reflection iconBoard Chair & Reflection

Preview Available

Board Chair & Reflection

Jul 24, 2022 10:35am ‐ Jul 24, 2022 10:45am

Identification: 23

Incoming Chair of the National Board of Trustees, KC White, will reflect on her time as chair of the Adult Advisory Council and speak to her vision for the Foundation in this new chapter.

Speaker(s):

Infection Research Initiative Update

Jul 24, 2022 11:00am ‐ Jul 24, 2022 12:00pm

Identification: 25

Join us to hear an update on the progress of the CF Foundation’s Infection Research Initiative since its launch in 2019 and learn where the strategic vision is headed in the future. You will also learn more about the therapeutic development industry portfolio and exciting happenings in both clinical and basic research areas.

Speaker(s):
  • Tiffany Burnett, Senior Director, Biopharma Programs, Cystic Fibrosis Foundation
  • JP Clancy, MD, Senior Vice President of Clinical Research, Cystic Fibrosis Foundation

Navigating the Path: Approaches and Progress Toward Genetic Therapies for CF

Jul 24, 2022 11:00am ‐ Jul 24, 2022 12:00pm

Identification: 26

Understand the basic biology behind cystic fibrosis and the approaches to treat the underlying cause of the disease – mutations in the CF transmembrane regulator (CFTR) gene. Learn how mutations in different parts of the gene result in diverse protein defects, and in some cases complete loss of CFTR protein. This session will also break down the most common approaches for genetic therapies, which aim to restore functional CFTR expression by delivering RNA, DNA, or DNA editing machinery. If successful, these therapies could benefit all people with CF, including those with rare or nonsense mutations. To close the session, you will hear about the challenge of packaging and delivering genetic therapies for CF and learn how the Foundation is working to overcome this hurdle.

Speaker(s):
  • Kara Foshay, PhD, Director of Biopharma and Medicine Programs, Cystic Fibrosis Foundation
  • John Sheridan, PhD, Ongoing Research Director, Cystic Fibrosis Foundation

Mental Health: Learning. Planning. Funding.

Jul 24, 2022 11:00am ‐ Jul 24, 2022 12:00pm

Identification: 27

During this session, you will learn about the ways the CF Foundation invests in ongoing education and support to optimize mental health and emotional wellness services for people with CF – a key priority outlined in the Foundation’s strategic plan.

Speaker(s):

Advanced Lung Disease and Lung Transplantation: Why It Still Matters

Jul 24, 2022 11:00am ‐ Jul 24, 2022 12:00pm

Identification: 28

Learn about the Foundation's efforts to improve the lives of people with advanced CF lung disease, those considering whether or not to have a lung transplant, and those who have already had a lung transplant. Our advanced lung disease program is a part of our commitment to meet the needs of all people with CF and to leave no one behind in the search for a cure.

Speaker(s):
  • Erin Tallarico, RN, BSN, Lung Transplant Initiative Director, Cystic Fibrosis Foundation
  • Albert Faro, MD, Senior Director, Clinical Affairs, Cystic Fibrosis Foundation