How did we get there?
by Robin Dubin, Executive Director
The Biden Cancer Initiative encouraged organizations to submit new projects to be a part of their "Commitment to Progress" initiative that would be featured at the Biden Cancer Summit in September. Since we were getting ready to launch the HEROIC Mosaic Research Community, we applied for it to be one of their Commitments. Our project was selected to be one of 57 Commitments highlighted at the Summit. We were then invited to a private group meeting to present our Commitment to Vice President Biden in person.
We were one of just nine of the 57 Commitments that were selected to meet with the Vice President! And here is how that meeting went.
It was a great meeting. VP Biden definitely knew what Lynch syndrome was as he mentioned it from the very beginning. It was an amazing experience to tell our story to him, especially in front of all of
the other groups that are all also doing incredible things, but are much larger and have more resources behind them.
So I started off by telling our personal story and how that led us to start AliveAndKickn. About how Dave was 29 in 1997 the first time he was diagnosed. How after he got through treatment, we went on with our lives, and when he was diagnosed again in 2007, he got genetic testing and how it motivated him to get more involved. How he became a patient advocate for colon cancer organizations and ran for town council on the ticket with Obama/Biden. And how I have the paper ballot with me and Dave asked me to ask him to sign it. Which he of course said yes. I went on to tell him that when we got the Lynch syndrome diagnosis we quickly realized the lack of patient resources, education and awareness for this genetic condition. So when Dave lost his reelection bid in 2011, he turned to me that night and said, "now we can start our non profit". And I said, "While we have a story, we have no name and no money." So we had to think very strategically on how we could make a difference with limited resources. So we worked with the Genetic Alliance to develop the patient registry on their platform through a RWJ grant and worked to enroll lynch patients to provide their data. And how our new Commitment is the Mosaic Research Community, where patients and researchers come together to have discussions that will turn into research questions that will turn into studies that we will initiate using the data in the registry. After I finished telling our story, he asked me how Dave was doing and I said, "Great, he is here at the Summit." And he said, "Tell him to come in here. Text him and get him in here!" So I did. A few minutes later, Dave comes storming in the room, sure he is going to be tackled by secret service (he wasn't), and the first thing Joe Biden says to him is "You and I have something in common, we both married up!" And they cleared the chair next to Joe for Dave to sit down. And so he spoke for a while more, and when the meeting was over, Dave was able to show him the ballot with both their names on it and he signed it and took pictures.
Apparently we made quite an impression as Vice President Biden is talking about AliveAndKickn and our registry and research community in his speeches. We are the only Commitment that he mentioned and described. I cannot articulate how incredible it feels to have started this organization just a few years ago and taken it to the point that it is getting attention from world leaders on an international stage.
Thank you all so much for your continued support, it means so much that what we are doing can make a difference in so many lives.