PatientsLikeMe ™

We experienced the power of patients helping other patients during the six years we cared for our son, Ben. Ben was five when he was initially diagnosed with a malignant brain tumor. His doctors told us that he had little chance of living more than six months. I became a fanatical researcher, learning everything I could about Ben's treatment and possible therapies that could help Ben. We all learned a great deal in the process, and we learned to be partners and advocates for Ben with his medical team. Ben actually "beat" that first tumor, and then developed and "beat" a second tumor, and then developed a third over the course of the next six years. He died from that last tumor, but during those six years he lived a mostly normal, happy life--despite having only a half head of hair and too many hospitalizations and treatments.

During this I realized how hard it could be for patients and their caregivers to get the information they need to make informed decisions, or to simply work their way through the healthcare system. Ben had the best medical team in the world but there was much they did not know about coping with the toxicity of chemo and other real-world issues from Ben's treatments that I felt the need to understand and act on. Much of what I learned I learned from other caregivers, and in return I passed on as much as I could to other parents. We learned more than we wanted to during those years, and I often wished there were a better way to learn and share information. That is what led me to PatientsLikeMe, the chance to work at a place that truly believes in the power of shared information, where the patient comes first.

From personal experience I understand the stress of dealing with serious health issues, the importance of learning from others, the challenges of learning enough to make tough decisions, and the need to pass on what we learn to others going through similar challenges. PatientsLikeMe is making a difference in the lives of many of its members by helping people share information and experience with others facing similar situations. This is helping to transform healthcare - empowering us all to be more active participants in our health and well-being, and the healthcare of our families. 


Even before PLM I had an interesting professional career. I worked at the former Digital Equipment Corporation (DEC) for 18 years in a variety of software management and consulting roles, including Technical Director for their initial intranet (back when the web was just beginning!), then spent 10 years at a division of IDG where I started and managed their online business and several user groups.  I later co-founded  a healthcare quality assessment company. Hopefully all of this was good training for the real work of my life - PatientsLikeMe!