One of the scariest things as a parent is to learn that your child has a disease that has no cure. This happened six years ago when my son William was born prematurely at 30 weeks and developed hydrocephalus. It was a big Greek word for a condition that had little medical research and its only treatment required brain surgery. The treatment, a shunt, has the highest failure rate of any medically implanted device. Nearly 50 percent fail within the first two years. So my poor boy had five brain surgeries in three years. This was no way to live.
As a Microsoft executive used to data at my fingertips, I was scared by the lack of scientific knowledge of the brain and hydrocephalus, and the lack of viable treatment options in development. I’m accustomed to having market “influence” in technology, but this is a whole different arena, and I was intimidated at first on how to positively change the scientific research ecosystem for hydrocephalus. But with a small dose of bravado, a large quantity of ignorance and most importantly a sick child who I loved, I was determined to change the state of research for hydrocephalus which only receives a few million dollars in federal research funds each year.
I am not sure if there is one blueprint for increasing the amount of disease research funding. There are lots of stories worth understanding like Pat Furlong’s. She is a mom of two fatally ill children, who has increased funding for a disabling genetic disease called Duchenne Muscular Dystrophy. And there is Michael J. Fox, the actor who used both his money and fame to increase Parkinson’s disease awareness and research along with former U.S. Representative Morris Udall.
I was a former Microsoft executive when I went to the first hydrocephalus workshop held by the National Institutes of Health (NIH) in September 2005. There were 180 researchers, clinicians, government staffers and voluntary health organizations. The scientific medical content was too much for my computer-science oriented brain to process. But I met people and listened. I was overwhelmed on how to tackle this problem by myself. I needed a team — like the strategic consulting company McKinsey — that I had worked with at Microsoft. I didn’t have this option.
So I contacted a friend, Charles Hill, with the University of Washington MBA program. In January 2006, he gave me an opportunity to speak to the Executive MBA students. I described the dearth of hydrocephalus research. I asked who would join me in “boiling the ocean” and setting a strategy to “move the needles.” One student, John Smith, said, “I have a five-year-old son with hydrocephalus. I’ll help.” We formed a team with several of his classmates with the mission of changing the state of hydrocephalus research.
The team developed a three-part plan: to form a North American clinical research network that would pool patient data to create better treatments; push Seattle Children’s Hospital to form a center of excellence; and join the board of directors of the largest patient advocacy organization – the Hydrocephalus Association (HA).
Five years later, the Hydrocephalus Clinical Research Network (HCRN) now includes seven children’s hospitals and affiliated universities in the U.S. and Canada. HCRN has reduced the post-surgical infection rate by more than 35 percent. Seattle Children’s, spurred by a group of dedicated parents doing fundraising led by my wife Lori, hired two hydrocephalus researchers and is beginning to develop a significant hydrocephalus research program that spans from its Center for Integrative Brain Research to its clinical practice by participating in HCRN. I also joined the board of HA in 2006.
HA is now twice the size when I joined ($1.7MM). I became chairman in 2009. In three years, it has gone from being a national support organization to the largest private funder of hydrocephalus research. HA used that bully pulpit to encourage the NIH to spend more time, effort and money on hydrocephalus research. Funding has doubled, but it is still not enough. In 2008, I met with Story Landis, the director of the National Institute of Neurological Disorders and Stroke (NINDS). It is the largest funder of brain research in the country. I shared what I was doing about hydrocephalus research and pressed for more effort from NINDS.
Last week, I was appointed to the NINDS Advisory Council for a 4-year term. It is an 18-member panel set up to advise Director Landis on research grants and policy strategy. I’m officially a “special” government employee. I’m no longer running a startup or managing a division at Microsoft. But I tell my son William that daddy is doing everything he can to try to find a cure for hydrocephalus!
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