Alive And Kickn: How A Survivor Created A Resource For People With Lynch Syndrome
Getting a cancer diagnosis is devastating news for anyone. Dave Dubin has gotten three of them. After his second, he started a foundation, AliveAndKickn. It’s named after two of his passions: being alive and his love for soccer (the spelling is to avoid confusion with the Simple Minds song of the same name).
We spoke to him about his journey with the organization.
I know that the story of AliveAndKickn starts with your personal diagnosis. Can you talk about your first diagnosis? My first cancer diagnosis was in 1997 at age 29. I had the traditional symptoms of blood in the stool, feeling of cramping, but I wasn’t lethargic since I was only 29. Ultimately after having a partial colectomy, it was determined to be stage 3b colon cancer. Although that was surprising to hear at that age, my father and grandfather had colon cancer previously so it almost seemed like a rite of passage. I had six months of chemotherapy, and essentially went back to my new normal life.
When did you decide to establish AliveAndKickn? After my second colon cancer in 2007, as well as my brother’s previous colon cancer, it was determined that it was genetic, something called Lynch Syndrome, which as we found out, was the most prevalent hereditary cancer mutation, but was still virtually unknown. I was a soccer player, and since my wife Robin didn’t like the name “Dave’s not dead yet,” we chose the name AliveAndKickn for the foundation. We felt incumbent to get the word out on Lynch Syndrome so that others could benefit from my story, and hopefully prevent future cancers by helping people to know their genetics sooner rather than later. Also, by the time of my Lynch Syndrome diagnosis, we had three sons already, and there was a 50/50 chance that any/each/all of them could inherit my mutation. We had always worked in the healthcare business, and if we didn’t know what Lynch Syndrome was, in all likelihood others would be unaware as well. Without seeing another Lynch Syndrome non-profit in the space, we jumped in. AliveAndKickn became a 501c3 non-profit in 2011.
I know that a big function of AliveAndKickn is to help people navigate the healthcare system. Can you discuss why that is so difficult, particularly for those with cancer? A ton of technology and resources are put into the healthcare system, but it’s clunky, and too often, finances and geography dictate access. Hearing “no” is a part of any system, especially in healthcare, and too often people give up the first time. Those of us with Lynch Syndrome not only have primary care, but also typically a gastroenterologist, obgyn, urologist, an oncologist, and more that we see regularly. Often we’re traveling to get to them, and often, they are in different systems with different medical records, and even still, many of these systems don’t communicate with each other. Throw in the inability to get time off, access to mass transit, basic inequalities such as food insecurity and/or lack of insurance coverage, and you have a recipe for inequality. There are programs for people to access, and specialists who will help navigate, if people are empowered to help themselves and take the initiatives.
Tell me about some of AliveAndKickn’s big events. For the past six years, we’ve been hosting our Living with Lynch patient advocacy workshop. It’s not a conference, as it’s a limited group of about a dozen people who apply and agree to spend several days off-site. We’ve done these with health systems such as MD Anderson, Ohio State, and Massachusetts General, and the researchers and clinicians who participate, get as much out of this as the patients. By getting content on camera, we have the ability to share the message that getting genetic testing before cancer is the best route, and that Lynch Syndrome affects about a million people in the US, most of whom do not know they have a mutation. It affects all ages, including younger populations, women as well as men, people of color, and that it’s more than just colon cancer, affecting urological systems, reproductive systems and more.
Why is soccer is so important to you? Talk about why it is crucial to have something that you love when you’re dealing with cancer. I’m not sure why soccer ever became such a part of my life. I was born in Brooklyn; it wasn’t something handed down from previous generations. I was good at it, and I enjoyed it, including coaching. Hopefully, everyone has a focus that gives them solace and strength during trying times. Cancer is a shock to the system, so having something to fall back on can be lifesaving, both physically and mentally. Some play video games, knit, sing, listen to music, whatever. I feel very fortunate that I’m still able to play the game I love, even at my age.
Anything else that you’d like to add? We all have bad days so I don’t preach about needing to be positive throughout cancer, Lynch Syndrome or life in general. I also don’t equate cancer to a battle, as in the end, death comes for us all. I would never want someone to feel like they lost the battle, as it’s not a war.
