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At 29 years old most men would be unable to grasp a diagnosis of colon cancer. Out of the blue. But David Dubin wasn’t like most men at the age of 29. When diagnosed with cancer for the first time, he felt like it was almost a rite of passage. That’s not to say he was complacent with his colon cancer diagnosis or lacked fear. In fact, he describes that period of time in his life as very lonely. However, given that his father and grandfather before him had colon cancer, David knew the protocol: surgery, chemotherapy, and then move on with your life if you were lucky.
That is, until everything changed a decade later in 2007. Barely 13 months after a clear colonoscopy, David’s colon cancer returned. Again, out of the blue.
But by 2007, genetic sequencing had become common enough practice that David had both surgery and a blood test. A blood test that quite possibly changed the course of a human life and a disease. Because at that time, David Dubin was diagnosed with a genetic mutation called Lynch syndrome. A hereditary cancer that is estimated to affect almost 1 in every 300 Americans – which means that it isn’t at all rare. But the staggering number of those who may be carriers of an alteration in a gene that commonly causes colorectal cancer and/or endometrial cancer and not know it is what really sets Lynch syndrome apart.
Not only are people with Lynch syndrome more likely to be diagnosed with cancer at younger ages, but they are also at increased risk of developing other types of cancer. Which David did,finding out two years after his Lynch diagnosis that he also had a kidney tumor.
Changing The Course Of Cancer
Thus, during his personal journey with Lynch syndrome, Mr. Dubin set out to change history. Not only his own and his families, but for others with Lynch syndrome – particularly the 95% of those who do not know they have it – by providing instruction on testing, resources he never had and research that had been unavailable. And with that mission, AliveAndKickn was born. An advocacy organization for education, screening, and research, as well as the world’s first Lynch syndrome registry so that individuals who felt alone could help one another.
As a small foundation, AliveAndKickn had a major uphill battle for both creating awareness broadly and for intensive data aggregation in the first-ever ‘HEROIC registry,” the first of its kind Lynch syndrome registry where patients can upload their own data. But David, his wife Robin, as Executive Director, and their Board of Directors saw the potential market that existed for creating a space were people could learn about predisposition before cancer diagnosis and have a network of peers throughout their own journey. They could also feel safe by determining their own privacy settings on the registry.
The information allows for people to learn about screening tests and blood tests that can determine the likelihood of someone having Lynch syndrome or if someone carries the mutation in one of several genes associated with it, and what potential unidentifiable mutations might exist.
The HEROIC registry has become the very definition of patient-centric cancer care. And with its success AliveAndKickn expanded their work through a partnership with UCSF called the Mosaic Research Community, which creates a platform for patients and researchers to produce an ever-evolving dialogue around what researchers and patients actually want and need.
The Future Is Bright
There are two major drugs out, both FDA approved, that demonstrate how much Merck and Bristol Myers Squibb are investing in immunotherapy and the treatment of MSI-high tumors, a common trait of Lynch syndrome patient’s tumors. David Dubin contends that they could invest in growing registries like the HEROIC Registry to learn about patients before they get cancer.
While AliveAndKickn continue to build their own registry and work on future endeavors like an app for Lynch syndrome patients and care givers to navigate their own journeys before, during, and after diagnosis, the Dubin family continues their own personal mission to fight the hereditary syndrome. That’s because before David was diagnosed, he and Robin had three sons. And they each stood a 50/50 chance of inheriting the autosomal dominant gene mutation.
To date, their oldest son Zach had genetic testing when he was 18 and found out that he tested positive for the same Lynch gene that Dave has. Since then, he has graduated from Drexel University in Philadelphia and negotiated the life of a “previvor,” or someone who is positive for a hereditary cancer genetic mutation that has not yet had cancer. Zach is now seeing a high-risk oncologist and has maintains his annual vigorous testing for cancers. He is in the process of applying to graduate school to get a masters in genetic counseling. Their middle son, Corey, is now 19 and a freshman at NYU, having tested negative for the gene last year. Their son Max is currently 15, and will get tested when he turns 18 years of age.
But no matter the outcome of that last test, the Dubin family has committed their life’s work to helping others in the same fight for life as so many in David’s family. And thanks to them, each patient’s journey after them will be a little bit easier.
