PatientsLikeMe ™

My Bio
I have had the good fortune to be involved in some interesting work--web development, systems engineering, computer systems design and development and aerospace and automotive systems design. I've been involved in several start-ups, led a team that developed one of the first large-scale intranets, and managed the online division of one of the world's leading technology publications for ten years.


Personal Story
I learned a great deal in my professional life, but my real learning has come from the our children, including our son Ben, who was diagnosed with the first of a series of malignant brain tumors when he was five. Over the next six years Ben would undergo a number major surgeries, chemo, radiation and many hospitalizations, but did so with amazing grace. His attitude taught all of us who knew him a life lesson about strength and courage. 

Ben's was initially not expected to live more than a few months, so we frantically researched all we could, trying to learn what, if anything, had helped others. This was a frustrating time, as we found it difficult to find others we could talk to, although we eventually were able to contact many experts, patients and caregiver parents who were wonderful resources.

This experience taught us how hard it can be for patients and their caregivers to get all the information they need to make informed decisions, or to deal with the day-to-day realities of dealing with a serious illness and it's consequences. We learned a great deal about this from his wonderful healthcare team (especially his nurses), and other parents. These lessons ranged from the mundane details of IVs,  to the daunting challenges of preparing for chemo sessions and other major interventions, and then making decisions in the face of conflicting medical opinions.

I was fortunate to be involved in the very first days and subsequent explosion of the Web. At PatientsLikeMe I am able to combine my fascination with this communication medium with a very real and important problem and opportunity - helping us all become more informed and empowered patients.

Since Ben's passing I have wished there were a better way for patients and their caregivers to learn and share. There is, and I feel fortunate to be here, where I can apply what I have learned in my professional life to my passion for helping people help one another.