By Laurie Fenton Ambrose, President & CEO of Lung Cancer Alliance
My heart is heavy thinking about a world without Jane Reese-Coulbourne – an extraordinary woman, leader, advocate, and friend – who passed this week from cancer.
Her death leaves a gaping hole in the world of cancer advocacy in so many ways and on so many levels she transcended work in science, policy and advocacy. Her footsteps helped guide so many through the years who were searching for better paths forward personally and organizationally. She was the “go to” in the cancer community if you needed strategic advice or historical context about how others navigated challenges and opportunities in their cancer “movements.”
This is the case for Lung Cancer Alliance. Without Jane’s counsel in 2004 when we decided to move from Washington State, where we were founded in 1995 by a small group of survivors and patients, to Washington, DC, we would not be the national organization that we are today.
I never thought I would hear the words that Jane had succumbed to cancer knowing the many battles she fought – and won – against all odds. It was as if she was a cat with nine lives as she never allowed cancer to overtake her life. Beginning with a rare breast cancer diagnosis very early in life, Jane was only expected to live a few months. Miraculously, clinical trials saved her time and again. And she would say to herself, “why am I the one who has survived?”
It was this question that eventually gave Jane the impetus to reconsider her professional career. She made a monumental decision to walk away from her work as a chemical engineer in a major corporation to become a patient advocate for the breast cancer community. And not just any patient advocate – a pioneering one. In 1991, she became the co-founder of the National Breast Cancer Coalition, the national grassroots advocacy organization working to improve public policies surrounding breast cancer research, diagnosis and treatment.
Jane helped strategically position the organization to achieve the preeminent standing it commands today. She gave “voice” to the community and helped devise policy strategies that have become playbooks for other patient advocate organizations seeking to increase federal research funding and improve health policies to increase survivorship. In addition, she became an expert in science and regulatory matters, the inner workings of our cancer research institutes, clinical trial designs and public-private research enterprises. No patient advocate commanded this level of knowledge. Jane was the “star power” in the advocacy world.
An interesting turn of events opened Jane’s eyes to lung cancer advocacy and ultimately to Lung Cancer Alliance. When her mother and father were diagnosed with lung cancer, she became aware of the lack of compassion and support for this community. I recall her telling me about the stigma she experienced when speaking to friends and doctors. They were uncaring and offered little hope and comfort. She was shocked by how few treatment options existed for her parents and how little emphasis was being placed on early detection. She quickly realized the uphill challenges that this underserved community faced when she reflected upon her own, more supportive breast cancer journey.
In a serendipitous meeting in 2004, Sheila Ross, a two-time lung cancer survivor and brainchild behind enhancing the advocacy work of Lung Cancer Alliance, asked Jane to bring her years of experience building grassroots movements to the lung cancer community. Sheila convinced Jane to help relocate and restructure Lung Cancer Alliance with increased focus on policy advocacy to align with the ongoing patient support and awareness efforts long in existence.
And the rest is history. I joined Sheila and Jane later that year and we were off and running building our “national movement” to reduce stigma, increase survival and improve access to high-quality care for all those impacted by lung cancer.
When I reflect upon those early days, I realize just how exhausting, stressful and emotional they were. So much was at stake. But it was Jane’s steady, experienced and strategic hand that kept our faith, hope and focus. She was the “special sauce” – the glue that pulled it all together – telling us “keep calm and steady on.”
And we did. We grew, advanced our work and began achieving successes for our community until she knew her job was done. She quietly stepped back and let us take the full reigns. The good news is that she never left our family remaining on our Board and making herself available day and night, seven days a week, for any questions or advice she could provide.
I, along with the entire lung cancer community, have lost a great one. Jane was a force. She was a change agent. She was a rock when our community needed one the most. She lent her voice for our social good. She put her arms around us to steady our first steps. We are stronger because of Jane.
In sadness, we celebrate Jane’s life and the extraordinary gifts she provided to the world around her. We will always carry forth with her indelible spirit permanently etched in our mission and our hearts.