3rd Annual End Lung Cancer Now Gathering
BE AN ADVOCATE CHAMPION TO END LUNG CANCER NOW!
On Friday, Nov. 3, End Lung Cancer Now (ELCN) hosted its 3rd Annual Gathering event at the NCAA Hall of Champions. Nearly 150 lung cancer advocates gathered to discuss the importance of lung cancer advocacy in improving early diagnosis, reducing mortality, and lessening the stigma around the disease. It was an educational and empowering event as we learned from national advocacy leaders on how we can all start right now, with what we have, right where we are to become advocate champions.
If you were unable to join us at this year’s Gathering, see below to access copies of the presentation slides and recordings, and download a digital copy of the ELCN Playbook.
To access copies of the presentation slides, click on the presentation title below.
Program Agenda
Time | Activity |
---|---|
8 a.m. | Welcome & End Lung Cancer Now Year in Review |
8:20 a.m. | Current State of Lung Cancer |
8:30 a.m. | Igniting Change – How to Start a Movement |
8:45 a.m. | Finding your Voice - Pathways to Effective Advocacy |
9:05 a.m. | Making Your Voice Heard: Advocacy for the Lung Cancer Community |
9:25 a.m. | Patient Advocacy - The Value of Our Stories |
9:45 a.m. | Q&A Panel Discussion |
10:15 a.m. | Overview of Working Groups |
10:20 a.m. | Break / Exhibits & Vendors |
10:30 a.m. | Working Group Sessions |
11:30 a.m. | Break / Exhibits & Vendors |
12 p.m. | Break to Lunch |
12:30 p.m. | Lung Cancer Survivor & Caregiver Story |
12:45 p.m. | Adjourn / Exhibits & Vendors |
If you would like to request a hard copy of the Playbook to be mailed to you or your team, please email elcn@iu.edu.
Featured Speakers
Heidi & Pierre Onda
The White Ribbon Project, Co-founders
High school sweethearts since 1979 and married 36 years.
They are the co-founders of The White Ribbon Project, which aims to change the public perception of lung cancer with the message: “Anyone with lungs can get lung cancer and no one deserves it”.
Heidi, a lifelong health enthusiast, health educator, and fitness trainer, with no smoking history, was diagnosed with Stage 3A inoperable cancer of the lung in October of 2018.
Pierre is Heidi’s caregiver and a recently retired primary care physician.
Lung cancer rocked their world, and they are fighting back strong and encouraging the lung cancer community to unify, stand tall, and increase lung cancer awareness by becoming visible and vocal, humanizing this misunderstood disease.
Dr. Jerome E. Seid
Michigan Society of Hematology and Oncology, Past President
American Society of Hematology Government Affairs Committee, Member
Dr. Jerome Seid is a trained hematology and oncology healthcare provider who is active in the Michigan Oncology Quality Consortium, an organization devoted to the improvement of hematology and oncology care throughout Michigan. From 2016 to 2018, he served as president of the Michigan Society of Hematology and Oncology, an organization devoted to advocacy and education for patients and providers and remains on the board of directors. He currently serves as a member of the American Society of Hematology Government Affairs Committee.
Seid's most recent efforts have been aimed at leveraging his many years of clinical experience and passion for advocacy to help pursue various legislative goals including oral chemotherapy insurance coverage parity and prior authorization reform. He has testified in the Michigan legislature several times in support of these measures. In 2020, Seid was awarded the American Society of Hematology Congressional Fellowship and served a year in the office of U.S. Senator Jacky Rosen (D-NV) where he worked on many issues including the federal response to the COVID pandemic. During that time, he helped draft and introduce two pieces of legislation to create a Medicare payment model for transfusion in the hospice benefit and the expansion of community palliative care services. Since completion of the fellowship, Seid has continued his community practice and begun a broader effort to increase awareness of the importance of advocacy training at all levels of medical education.
Brandon Leonard, MA
LUNGevity, Director of Government Affairs
Brandon Leonard is senior director of government affairs at LUNGevity Foundation, where he leads the organization’s legislative policy activities and co-manages the LUNGevity Advocacy Network. Prior to coming to LUNGevity, Brandon served as associate director of congressional relations at the American Association for Cancer Research (AACR), where he led the organization’s outreach to Congress and managed projects including Hill Days, congressional briefings, and special reports. Previously, Brandon served as vice president of strategic initiatives at Men’s Health Network, leading policy and advocacy activities for the organization. He has also held positions with the Foundation for Sustainable Development and the Office of the Governor of Virginia. Brandon holds an MA in international development studies from George Washington University and a BA in foreign affairs and Spanish from the University of Virginia.
Terri Ann DiJulio
Terri Ann DiJulio is a three-time lung cancer survivor, stroke survivor, and a member of a multigenerational lung cancer family. DiJulio is a lung cancer patient advocate and activist who raises awareness as a writer and inspirational public speaker.