Every year I think I’m finished writing blogs about LUNGevity, lung cancer and the best friend I lost to the disease 9-1/2 years ago -- and then something comes to mind that I want to share. I hope you’re not tired of me yet.
My Breathe Deep Team, Elyse’s Legacy, is preparing to walk together for its tenth year on May 6th. We walked in LUNGevity’s Chicago walk for three years, and then I founded Breathe Deep North Shore (BDNS) seven years ago to bring the walk to a community I knew would support LUNGevity in a BIG way. And they did not disappoint! BDNS has raised over $1.2 million in the last six years! Our team and the warm and meaningful BDNS event are Elyse’s legacy, as are the love and fond memories that remain with all of us who miss Elyse and her sweet smile every single day.
Recently, I sat with Elyse’s dad, Harvey, writing his annual fundraising letter for BDNS and he asked me, “If Elyse was diagnosed today, would she have lived longer?” Without hesitation, I answered a resounding yes. It’s a whole different lung cancer world since Elyse was diagnosed 12 years ago. Precision medicine was not the standard. Traditional chemotherapy and radiation were her only treatment options. TODAY Elyse would be tested at diagnosis for the genetic profile of her tumor and be given access to therapies and/or clinical trials targeted at her cancer’s mutation or be a candidate for immunotherapy. And she would most certainly have had a better quality of life while fighting this insidious disease. There have been 17 FDA approvals for lung cancer drugs in the last three years – exceeding the total number of approvals in the previous 12 years. This is real progress! Elyse would have also had a lung cancer community to share with and provide her the kind of support that only people living the same journey would understand. There are also so many more resources today for support, information, and access to treatments and clinical trials. It’s truly been a sea-change in recent years.
A diagnosis a few years later could have made all the difference for Elyse. But instead of mourning the ship that has already sailed, I look at how the tide has turned and the HOPE that has followed – HOPE that her legacy has helped to move forward – HOPE that all who support LUNGevity have helped forge ahead. I am truly amazed and proud of all that LUNGevity is doing to advance science, improve access for patients, raise awareness, increase education, and understand and communicate the experience of lung cancer patients.
I have very dear friends who are living active and meaningful lives with this disease because of the advances in research, advocacy and community. They have participated in clinical trials, walked in Breathe Deep events, participated in LUNGevity’s Hope Summits, created their own fundraising and support groups for their particular genetic mutations, and held rallies and meetings in Washington DC and their own communities. Lung cancer patients are living longer and fighting for change – WOW! Elyse would have been right there beside Jill, Ivy, Bob, Lisa, Traci and crew – making a difference any way they can.
So I just want to be sure you know that supporting LUNGevity as they fund research, turn up the volume on patients’ voices, and provide support to patients and caregivers really is changing outcomes and changing lives. Please keep the momentum going – and THANK YOU from the bottom of my heart!
Sue Bersh is VP-Communications with AMLI Residential, where she has worked for over 32 years. Sue lost her grandmother to lung cancer as a teenager, and in 2008 she lost one of her best friends, Elyse Bernstein Keefe, to the disease. Sue has been on LUNGevity’s Board since 2009 and is Founder of Breathe Deep North Shore. Sue lives in Deerfield, Illinois, with her husband, Joel, and has three sons: Sam, Danny, and Jonathan.