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Friday

Cam McLoud, board chair, will introduce the conference, followed by an overview provided by conference co-chairs Pam Baker and Justin Davis. Marc Ginsky, executive vice president and chief operating officer, will close the session.

Friday

Engagement can take many different forms. Join us for a conversation, led by the parents of a child with cystic fibrosis, about the various ways to build community. Learn more about opportunities through your care center, chapter, and broader CF network.

After, Jeremy Olimb, Arizona Chapter volunteer, will share his family’s journey as CF advocates.

Friday

This conversational session will focus on sharing successful strategies, tactics, and techniques to recruit effective, high-impact volunteers for all types of programs, initiatives, and roles. These include event committee membership, Tomorrow’s Leaders, Grampions, board membership, advocacy, educational programming, volunteer engagement efforts, and care center relationship building.

Learning Objectives: 

  • Identify candidates to fill specific roles within a chapter (in conjunction with the executive director) to help move the chapter forward.
  • Recruit high-impact volunteer leaders using practical tactics and techniques.
  • Use effective best practices to cultivate and steward stronger peer-to-peer relationships.

Friday

In this session, we will discuss what it means to be a CF advocate and ways to create opportunities for others to get involved. We’ll talk about how to encourage others in your community to join our effort -- even if they’ve "never done anything like that before."

Learning Objectives: 

  • Describe the importance of advocacy in accomplishing the CF Foundation’s mission.
  • Explain why organizing and having a strong front of advocates in a congressional district is important.
  • Accept the challenge by joining an Advocacy District Team.
  • Recruit others to join an Advocacy District Team.
Friday

Social media is changing every day. This breakout session will help you understand best practices and engage with your online audience. Bring your smart device to this hands-on breakout session, and work together as a team to create compelling content for your fundraising event.

Learning Objectives: 

  • Describe the value of social media as an engagement tool, including how Facebook Fundraising is changing the landscape.
  • Identify best practices.
  • Create an Instagram story for an upcoming event during the breakout session.
Friday

The CF Foundation has several programs to support the CF community. These include CF Foundation Compass, a patient assistance service; CF Peer Connect, a peer support program; virtual events created by and for the CF community; and Community Voice, a program for volunteers to shape CF care and research. You will hear real stories about ways these programs support the CF community and learn how to become an ambassador for community support programs.

Learning Objectives: 

  • Describe what Compass services and CF Foundation community programs include.
  • Find materials to help promote Compass and other programs that support the community.
  • Become an ambassador for Compass and other community support programs.
Friday

This session will use the format of the popular ESPN show Pardon the Interruption to share ways to grow your chapter’s Individual Giving Program, inclusive of Annual Fund, Major Gifts, and Legacy Society. It will focus on demystifying the campaigns and teaching attendees how to grow individual giving in their chapters by providing examples of how they can make a significant impact.

Learning Objectives: 

  • Identify one to three prospects for future engagement.
  • Verbalize the three Targeted Giving Initiatives.
  • Describe the ABCs of the Foundation’s Legacy Society.
  • Explain the giving cycle of Annual Fund.
  • Describe the role of the individual giving chairperson.
  • Apply CF Foundation mission messages when appropriate.
Friday

During this session you will hear from a panel of corporate volunteer leaders on what makes a successful pitch and how volunteers can be corporate connectors in their community. Later, a roundtable discussion will include information on the different ways corporations can engage with the CF Foundation. And, you also will learn how a personal story can be an essential part of a corporate discovery meeting and, ultimately, an ask.

Learning Objectives: 

  • Feel empowered to be a corporate connector and explain how their story could make an impact on local corporate engagement opportunities. 
  • Prepare to participate in a discovery meeting/corporate ask.
  • Share passion-specific ideas with honorees.
Friday

Hear new ideas on how to identify and recruit honorees and share creative ideas with them on how to fundraise.

Learning Objectives: 

  • Identify and recruit honorees for events using the skills learned in the session.
  • Share ideas with honorees to encourage fundraising.
  • Share passion-specific ideas with honorees.
Friday

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.
Friday

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.

Friday

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.

Saturday

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.

Saturday

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.

Saturday

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.

Saturday

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.

Saturday

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.

Saturday

teamMATEs will celebrate all we’ve achieved in the past year and look forward to the year to come.

Saturday

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.

Saturday

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.

Saturday

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.

Saturday

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.

Saturday

Maureen Fraser, senior vice president of field management, Molly Riley, vice president of volunteer and donor engagement, and our co-chairs Pam Baker and Justin Davis will close out the 2019 Volunteer Leadership Conference.