In January 2005, my son William was born 10 weeks prematurely and suffered a pulmonary hemorrhage on day two of his life. His first month was a harrowing period of life and death in the NICU at Seattle Children’s Hospital. He came home after two months having had two brain surgeries to implant a shunt to treat the brain condition he developed from his traumatic birth.
Hydrocephalus is an excessive accumulation of fluid in the brain that can cause severe brain damage or death if not treated immediately. The shunt has the highest failure rate of any medically implanted device – 50% fail within the first two years. At nine months of age, William had a prolonged seizure and his first shunt failure. He nearly died coming out of surgery but was saved by the great staff at Seattle Children’s.
My wife and I set out to understand the treatments, outcomes and state of research for this horrific condition that lead to annual emergency brain surgeries for our son.We were despondent with what we learned.The shunt was created in 1952 by a father of a child with hydrocephalus.While it saved lives, it seemed to usurp the drive to research therapeutic interventions or find a cure. The shunt manufacturers had made only minor incremental improvements to this failure prone device.Outcomes were dismal with below average IQ’s and 60% of the children not being able to live independently in adulthood.In the year of his birth, the federal government spent less than $2.50 per affected person versus more than $180 per person for a disease like Parkinson’s.
We decided we needed to change the state of treatment and research both locally and nationally. My wife went about making changes locally while I sought to change the national agenda. I engaged a team of students in the University of Washington Executive MBA program and created a plan to change the state of research.It called for me to do three things:
- Join the board of the largest national patient advocacy — the Hydrocephalus Association (HA) — and expand its agenda from support to research and federal advocacy.
- Given the challenges researching the condition, I co-founded what is now a seven center research network to study the condition called the Hydrocephalus Clinical Research Network (HCRN).
- Roll up all the fragmented efforts in hydrocephalus to get all the wood behind one arrow and call on our federal government to help change the state of research and treatment.
I joined the board of HA in June 2006 and began agitating for change. It took three years to change the board from a founding volunteer board to a strategic governing board.I became board chair and the organization’s most involved volunteer in 2009. We launched a research initiative six months later and created a major gifts capability to support the effort.We started a partner’s program to enable consolidation of smaller groups into one powerful voice for hydrocephalus. In June 2012 we partnered with HCRN to form a single fundraising and research organization.We are now the largest private funder of hydrocephalus research.In July 2012, we will have completed the move of our headquarters from San Francisco to Washington DC.Our first success in government advocacy was completed in May, 2012 when, with the help of Representative Rosa DeLauro, we got the National Institutes of Health to begin tracking federal investments in hydrocephalus research.
Paul Gross is an SVP Partner who is currently the Chair of the Hydrocephalus Association. His passion for advocating change in the state of treatment and research for this disease has led him to also co-found the 7-center Hydrocephalus Clinical Research Network and personally raise $1M in major gifts and donations for the organization.
This article was originally posted by the Microsoft Alumni Foundation as Paul (below) was one of their nominees for the 2012 Integral Fellows Award.