More than 100 lung cancer survivors and advocates united in Washington, DC to ignite change for all those touched by the disease by sharing their personal lung cancer stories with our nation’s leaders at the 9th National Advocacy Summit, which took place on September 27 and 28.
The Wednesday session kicked off at the historic Omni Shoreham hotel with a special live broadcast of the “Living Room” series with a discussion on “Catalyzing More Effective Treatments and Cures.” Lung cancer survivor, advocate and friend, Bonnie J. Addario, moderated a fireside chat with Ryan M. Hohman, JD, Vice President of Public Affairs at Friends of Cancer Research; Linda House, RN, BSN, MSM, President, Cancer Support Community; and Jennifer C. King, PhD, Director of Science and Research, Lung Cancer Alliance. The panelists discussed patient empowerment and how programs like LungMAP and LungMATCH are important guides to decision making around treatment options. The lung cancer community watched via YouTube. Watch it now!
The second discussion focused on “People Power: How Your Voice Makes a Difference!” and was moderated by Laurie Fenton Ambrose, CEO & President of Lung Cancer Alliance. Panelists included Karen E. Arscott, DO, MSc, Lung Cancer Survivor and Associate Professor of Medicine, Geisinger Commonwealth School of Medicine; Megan Gordon Don, MHS, President, MGD Strategies (previously, Vice President, Government Affairs & Advocacy, Pancreatic Cancer Action Network); and David Pugach, Chair, One Voice Against Cancer Coalition and Vice President, Federal Relations, American Cancer Society Cancer Action Network, Inc. The discussion reminded us of the power we have when we join forces on an issue and that the one thing an advocate can do that nobody else can is tell his/her story. David Pugach reinforced “We have seen a 73% increase in NIH funding for lung cancer and that’s a direct effect of advocacy.”
We were lucky enough to have a guest appearance, via Facebook LIVE, from John Matthews, a fellow lung cancer advocate riding his bike from east coast to west coast in the fight against lung cancer. He “dialed in” from the road and gave our advocates the push and energy they needed to head into their day on Capitol Hill.
The Summit advocacy efforts expanded beyond our group in Washington, DC. For the week of September 25-29, we held the first ever Lung Cancer Advocacy Action Week. Friends, family and fellow advocates from across the country got involved and showed support by sharing fact graphics on social media channels and sharing their stories with state reps via email, mail or Twitter. We all used #Rally4LungCancer bringing our voices together in one collective movement. We increased our on-the-ground efforts with over 100 messages sent to state legislators and a reach of nearly 100,000 people on social media channels!
On Thursday morning we came together on the steps of the US Capitol, dressed in teal and ready to take on the world! We fueled ourselves with a kick-off breakfast where we heard from Rep. Rick Nolan (D-MN), founder and co-chair of the Congressional Lung Cancer Caucus, as well as Tony Coelho, former House Majority Whip and longtime disability rights advocate. Being an epilepsy patient himself, Coelho spoke from personal experience on the importance of telling one’s story and the difference it can make.
Feeling united, supported and eager, we hit the halls of Congress running! With over 140 meetings with Members of Congress across 27 states, we made a strong statement with a number of Representatives interested in joining the Caucus and educated them on facts about the disease. More importantly, we raised our voices and stories to those leaders with different viewpoints with the hope that putting a face to the disease will sway them to put patient’s needs first in the future.
The Summit ended with a Congressional Reception and Awards Ceremony in the Kennedy Caucus Room where three awards were presented. Senator Dianne Feinstein received the Michael G. Oxley Leadership & Advocacy Award for her ongoing commitment to the cause. The Congressional Staff Leadership & Advocacy Award was given to Will Mitchell, Legislative Director of Rep. Rick Nolan and the Volunteer Leadership & Advocacy Award was presented to Deena and Roger Cook, longtime lung cancer advocates and friends of LCA.
The Summit not only started a conversation and ignited change, but also raised our voices as one. We look forward to continuing these efforts all year long. To learn more and get involved, click here!