Published by Louis J. DeGennaro, PhD, on June 29.
On July 1, I will retire after eighteen years at The Leukemia & Lymphoma Society (LLS). As I reflect on my time with the organization it’s clear that I spent these last eighteen years in the very best of company. I’ve been surrounded by dedicated staff, volunteers, researchers, clinicians, philanthropists, and partners—all laser focused on blood cancer patients and families and advancing treatment, support and policy. I am honored to have had the opportunity to serve alongside you, collaborating on the most fulfilling work of my career. I joined LLS to change it. In the end, it changed me. I prided myself on taking care of staff and volunteers, but in truth they were the ones who cared for me.
I’ve been asked a lot over these past several months about what I think my legacy will be. Well, I’m not one to think about legacy as a personal achievement. I believe my legacy lives in all of you.
Every day of the past eighteen years, I’ve been awed and inspired by your unwavering commitment to patients and families and to creating a world without blood cancer. That commitment has fueled our mission, and no matter which department or Region you’re in, or what LLS campaign, activity or initiative you support, your actions are making a difference. You have helped LLS become the “go-to” source of free information and support for blood cancer patients, families, caregivers and healthcare professionals.
Your impact is felt every time a newly diagnosed patient calls our Information Resource Center, or when one of our Clinical Trial Support Center nurse navigators walks a family through trial options. It’s evident in the smiles of the students who’ve received an LLS Scholarship for Blood Cancer Survivors, allowing them to pursue their educational dreams after the disruption of cancer. It’s reflected in the experiences of patients like Donna, a participant in our unprecedented Beat AML® Master Clinical Trial, launched in 2016 after we recognized the urgent need to do better for AML patients. This groundbreaking trial yielded less harsh and more effective targeted therapies that have revolutionized the way AML is treated. And it set the foundation for the first-of-its-kind global master clinical trial for pediatric acute leukemia (PedAL), a component of the Dare to Dream Project, which is transforming treatment and care for children with blood cancer.
Thank you for embracing bold ideas that are getting noticed. As Cause Reports wrote in their report: “LLS is a thought leader – they are pushing the boundaries by creating new research and clinical trial models and have successfully invested in venture philanthropy. We encourage LLS to continue to think big and be forward thinking.”
As the largest nonprofit funder of blood cancer research, LLS has invested more than $1.6 billion, and in the last six years alone has helped advance more than 70% of the 110 blood cancer treatments approved by the FDA. These include extraordinary breakthroughs like CAR –T-cell immunotherapy, which is providing a lifeline for patients with acute lymphocytic leukemia, multiple myeloma and non-Hodgkin lymphomas. Our research grants support scientists at the world’s most prestigious institutions to advance next generation approaches in immunotherapy, gene editing and precision medicine. Together we launched LLS’s pioneering Therapy Acceleration Program (TAP) in 2007, which partners directly with biotechnology companies to invest in innovative therapies to change the standard of blood cancer care. I’m proud to say that it is one of the most successful venture philanthropy programs in the country.
None of this would be possible without your willingness to shake up the status quo.
I saw that spirit in action last month at LLS Lobby Day in Washington DC. There, more than 100 LLS staff and volunteer advocates gathered on Capitol Hill to ask Congress to support the NIH Clinical Trial Diversity Act, focused on making clinical trials more diverse, affordable and accessible. Thousands of volunteers also participated virtually, sending nearly 2,500 letters to Congress and creating a buzz on social media. As part of the team that helped create the Office of Public Policy (OPP) fifteen years ago, it has been humbling to witness its remarkable expansion of staff and volunteers and its collective power to secure some of the most significant health policy reforms in history. Improving access to care remains a top priority for LLS and health equity will continue to be a focus, through multifaceted efforts across research, education and support and advocacy.
I am so proud of what we’ve accomplished together as we envisioned a world without blood cancer. And we fueled it all with innovative fundraising programs that grew net revenue before Mission from $107 million in 2014 to over $256 million in 2022. But there is still much more to do as we strive for that ambitious goal. I have no doubt that with your talents, expertise and passions, and the leadership of LLS’s new President and CEO, Dr. Andy Kolb, LLS is on the cusp of more transformative progress. I look forward to the incredible innovation and impact you will create together.
It’s been an amazing 18 years. Thank you for your support, your friendship, and your unyielding commitment to blood cancer patients and their families. You have created a legacy that will continue to grow in years to come. Thank you for allowing me to be part of it.
This article was originally published June 29, 2023, by Leukemia & Lymphoma Society. It is republished with permission.