2024 New York Lymphoma Walk

Ilyse's Sunshine Seekers

My lymphoma diagnosis changed my life;  a biopsy in April 2018 revealed stage 4 non-Hodgkins T-cell lymphoma. As an educator with a penchant for wellness and self care, this rocked me — you never think it will happen to you until it does. 

Through appointments, tests, and hours of research I finally received an accurate diagnosis of Sezary Syndrome, a subtype of cutaneous T-cell lymphoma (CTCL). I underwent seven treatment protocols and multiple surgeries over five years, trying six therapies without success. These treatments brought many challenges beyond the predicted physical hindrances. I leaned on the support of my loving husband, Barry, our daughters Lauren and Hannah, family and friends. Fighting cancer cannot be a solo journey. 

In October of 2020, I began my seventh treatment protocol with a new monoclonal antibody, under the expert care of my oncologist and honoree of the walk, Steven Horwitz MD at Memorial Sloan Kettering. During my first infusion, I experienced a near-death reaction, caused by cancer cells breaking apart in the blood, toxifying my system. Despite a traumatically rocky start, this latest treatment has been unbelievably effective. In January 2021, my immunity skyrocketed and I have been in remission since.  This new drug was not accessible when I was first diagnosed, however, thanks to countless hours of research powered by organizations such as LRF, this medication is not just available to me, but to patients struggling to seek treatment for rare disorders such as mine. Of course, there is still much unknown about long-term effects, prompting the need for additional research and study.

The Lymphoma Research Foundation (LRF) is instrumental in supporting me, offering disease-specific resources through its website, patient programs, and online videos to better understand my diagnosis and stay up to date on new drugs and treatments. Seeing the many subtypes represented on the Foundation's page, alongside the dedicated researchers bridges the very deep and intimidating chasm between science and hope. 

For me, the years ahead are about relishing in all of the delights of life. I reflect on how the journey has allowed me to transform into my true self. Though I am having a cancer experience, the diagnosis does not define me; instead, it shapes me to live a life filled with education, giving, learning, and evolving. In retrospect, it’s easy to contextualize and shape this diagnosis as a wider portion of my “calling” and ultimate purpose, but I am only here because of the research and improved treatments.  

This is why I am chairing the New York Lymphoma Walk benefiting LRF. I am walking in honor of all those impacted by this disease and hope for a better future for us all. Please consider donating to the Foundation and joining me on June 15th at the South Street Seaport. 

The walk is an incredible opportunity for us to collectively gather, celebrate, and spread hope as we stride forward hand in hand. Together, we can make a significant impact in the pursuit of life-saving treatments, including the one that saved my life. These breakthroughs are made possible solely due to the generosity of people like you.

Thank you for being a beacon of hope. 

Click below to see my interview in Pulse magazine!


Finding Light In the Middle of the Woods | Lymphoma Research Foundation

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