PROJECT SEFU - going the distance -

Midway through my freshman year at CU Boulder, I was home for Christmas break, wrestling with my little brother Chase, when he discovered a lump in my neck. After a visit to my pediatrician, followed by multiple inconclusive scans, I went in for a biopsy and was later diagnosed by Memorial Sloan Kettering Cancer Center with Sclerosing Epithelioid Fibrosarcoma (“SEF”). If you’ve never heard of Sclerosing Epithelioid Fibrosarcoma, that’s because it’s an extremely rare soft tissue cancer. SEF is aggressive and has a high recurrence rate and potential for metastasis. Not much else is known about SEF, and there is currently NO TREATMENT OR CURE!

We wasted no time, found a surgeon, and had my tumor resected within weeks of diagnosis. In most cases, the next step after removing a potentially metastatic cancer would be treatment to prevent recurrence and metastasis. Because SEF has no known treatments or cure, I was left with a poor prognosis. My family took immediate action and began searching the globe for options and answers.

My oncologist, Dr. Leonard Wexler at MSKCC, urged us to be proactive and connected us to Dr. Saskia Biskup at CeGaT in Tübingen, Germany. Dr. Biskup and her team have developed an innovative, vaccine-based approach that seeks to stimulate my immune system to recognize and mitigate cancer cells should they reappear in my body. My team of doctors believe that CeGaT’s individualized vaccine is the only scientifically safe, sound, reputable and viable option in the world.

CeGaT is a fee-for-service clinical enterprise that offers an individualized diagnostic approach with the aim to create a vaccine for each specific patient for whom standard treatments are not an option. The approach involves monthly injections of a cocktail of tumor-specific peptides in an effort to stimulate my immune system to recognize cancer cells should they reappear in my body. I am fortunate enough to be able to receive this specialized treatment, which includes 10 Trips to Germany in the next 18 months. For me, this vaccine might be my only chance at mitigating the risk of metastases and having a future free of cancer.

I remain committed to raising awareness and changing the prognosis of SEF, and I’m in the process of setting up a foundation called Project SEFU. Through Project SEFU, I plan on “going the distance” from every angle. Whether it’s going the distance to Germany, pushing the limits of groundbreaking science, technology and medicine, or helping others gain access to care that might otherwise be unattainable.

I’d like to thank my family, friends and doctors for supporting me throughout my journey and “going the distance” with me.

I know God has a plan.

Cole