We recently sat down with Amanda Haddock, President and Co-founder of the Dragon Master Foundation and newly named White House Precision Medicine ‘Champion of Change’ to find out how she and her company are disrupting the healthcare system with a mix of technology, data sharing and patient advocacy. Here’s what she had to say.Ellen T Matloff: Congratulations on your Champions of Change Award!
Amanda Haddock: Thank you.
ETM: I know that you started your non-profit, Dragon Master, after your son David died from brain cancer. Tell us about David.
AH: He was sweet and crazy and loved to be weird. He was actively trying to do things that were not normal. He loved wearing Hawaiian shirts, giving people hugs, and sending positive vibes out into the world. He was just a genuinely nice person --- he was super sweet. Kids still come up to me and tell me about nice things David did for them.
David did not want to be known as the ‘kid with cancer’. He was diagnosed with brain cancer at age 16 and just wanted to go to high school and be a normal kid. At the same time, he really wanted to help other kids with cancer. He was the type of kid who would be offered a clinical trial opportunity and would ask, “Is this going to help other people?” If the answer was yes, he would sign on. Meanwhile, as his Mom, I was standing there thinking, “Is this going to hurt him? What does this entail? How much time will this take?" But for David, he just wanted to help others.
The Haddocks and close friends at dinner
ETM: What is the Dragon MasterFoundation and how did you get started?
AH: We did not plan to start a foundation – there are so many great groups out there already. We were at a conference listening to Anna Barker, MD from Arizona and heard her say that ‘if we could compare 50,000 genomes, we could cure cancer’. After her lecture my husband and I basically ran to the stage to speak to her. She explained that the genome is huge, and no one has the storage space for that kind of data – and my husband and I were thinking, ‘We can do this!’ We started asking a lot of questions and looking for an existing Foundation already working on this issue. We didn’t find the scalability that we were looking for in other projects – they didn’t exist, and so we started our foundation.
We’re collaborating with many partners who had already done a lot of work in this area. Children’s brain tumor tissue consortium is one of those groups – at the time they were 4 hospitals, and had already agreed to some data collection standards and some sharing practices around brain tumor samples. It allowed us to start with a very high quality source of data that we could begin sharing on the web. What we’re doing that’s different is we’re taking data and putting it into a cloud-based format with open access and open source, so anyone can look at and study the data. We know there are a lot of really smart people, in addition to scientists, who can study data like these, and we want them to have access. We also link the data to the patient chart and long-term data about how they did on different treatments, etc.. so that people can compare the genome to all of these data. It was more important for us to build something small and excellent, than something big and less perfect.
ETM: Dragon Master – where does this name come from?
AH: David didn’t want the attention of having a foundation named around him. We kicked around a lot of names, and most of them were overwhelming and long – so we chose a name that only we could define. And David loved dragons, and some people call cancer a beast, so we chose Dragon Master.
Always game for a laugh
ETM: What about your own background led you to create Dragon Master?
AH: We are entrepreneurs. We’re used to thinking outside the box and creatively solving problems. My husband has been in the tech industry since he was 19 years old, so he knew the ins/outs of the problem. I’ve also worked with technology for 10 years and had experience in the non-profit industry, so I understood the challenges and the opportunities ahead.
ETM: Do you have any advice for other Foundation Founders?
AH: Surround yourself with people who are positive and honest with you. Your Board of Directors and Advisors shouldn’t be afraid to argue with you in a constructive way. You have to be able to defend your position and be passionate about what you’re doing.
ETM: What else should we know?
AH: It’s important that people feel empowered to make a change in their world. We felt so powerless when David was diagnosed, and that can make you feel very defeated --- if you keep pushing through and putting one foot in front of the other, your passion can take you places, and help you do things you never thought possible. Our passion has helped us create something that I truly believe will change the world.