2019 Volunteer Leadership Conference

Mar 29, 2019 ‐ Mar 30, 2019



Sessions

Peer-to-Peer Events: Get Out of the Box! New and Creative Fundraising Ideas to Energize Your Team

Mar 29, 2019 2:30pm ‐ Mar 29, 2019 3:30pm

Whether you’re new to fundraising for CF events or you’ve been doing this for years, this session will give you new, “out-of-the-box” ideas to help accelerate your fundraising success. You’ll leave the session equipped with ideas, information, and materials to help you in any peer-to-peer fundraising event, such as Great Strides, CF Cycle for Life, Xtreme Hike, and CF Climb.

Learning Objectives: 

  • Identify and implement new and effective peer-to-peer fundraising ideas for your team by using information and materials supplied during the session.
  • Network with other volunteers to continue sharing ideas post-conference.


Fundraising Breakout SessionsFundraising Breakout Sessions

Preview Available

Fundraising Breakout Sessions

Mar 29, 2019 2:30pm ‐ Mar 29, 2019 3:30pm


Our CF Story: One Community, Different Journeys

Mar 29, 2019 3:45pm ‐ Mar 29, 2019 4:45pm

How do we stay united and support each other when cystic fibrosis as we know it is changing and impacting everyone in different ways? Join Somer Love, Shelby Luebbert, and Jenny Livingston as they discuss their different CFTR modulator journeys, their hopes and worries about the future, and what continues to unite them as adults with CF: finding a cure.

Speaker(s):

Annual Awards Dinner

Mar 29, 2019 6:30pm ‐ Mar 29, 2019 8:30pm

President and CEO Preston W. Campbell, III, MD, will welcome attendees to the awards dinner, followed by a talk about the Leadership Council by its chair, Mike Beatty, Esq., and the presentation of this year’s awards.

Speaker(s):

Getting It Done: A Research and Medical Update

Mar 30, 2019 8:30am ‐ Mar 30, 2019 10:10am

Michael P. Boyle, MD, senior vice president of therapeutics development, and JP Clancy, MD, senior medical director of clinical research, will discuss the latest research to ensure all people with CF will eventually have a treatment for the underlying cause of their disease as well as therapies to effectively treat and prevent CF complications. Albert Faro, MD, senior director of clinical affairs, will talk about the latest developments in clinical care, including lung transplant.

After, Laura Gordon, Maryland Chapter volunteer, will talk about why she is fighting until it’s done for all people with CF, including people with rare and nonsense mutations.

Speaker(s):

Hot Topics: Session 1Hot Topics: Session 1

Preview Available

Hot Topics: Session 1

Mar 30, 2019 10:30am ‐ Mar 30, 2019 11:30am


Infection Research Initiative

Mar 30, 2019 10:30am ‐ Mar 30, 2019 11:30am

Dara Riva, director of clinical research awards, will discuss the new Infection Research Initiative and describe the six focus areas included in the Initiative, as well as provide some examples of infection research currently underway.

Speaker(s):
  • Dara Riva, MS, Director of Clinical Research Awards

Mental Health

Mar 30, 2019 10:30am ‐ Mar 30, 2019 11:30am

Living with CF, or caring for someone with CF, can be emotionally challenging. Learn about what the Foundation is doing to support emotional wellness from Paula Lomas, director of clinical communications, and a volunteer member of the Mental Health Advisory Committee.

Speaker(s):
  • Paula Lomas, MAS, RN, CCRP, Director of Clinical Communications

Nonsense and Rare Mutations: Tackling Nonsense and Rare Mutations in CFTR

Mar 30, 2019 10:30am ‐ Mar 30, 2019 11:30am

JP Clancy, MD, senior director of clinical research, will discuss current research being done to treat CF caused by nonsense-mediated mutations and other rare CFTR mutations.

Speaker(s):
  • JP Clancy, MD, Senior Medical Director, Clinical Research

New Therapies and Clinical Trials

Mar 30, 2019 10:30am ‐ Mar 30, 2019 11:30am

Michael P. Boyle, MD, senior vice president of therapeutics development, and Tony Durmowicz, MD, vice president of clinical development, will discuss emerging therapies as well as ongoing and upcoming clinical trials. Special attention will be paid to updates regarding next-generation CFTR modulators.

Speaker(s):
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