My Child Has WHAT? A Former Microsoft Exec’s Mission to Fight a Tough Brain Disease

9/19/11

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!

Paul Gross is a former Microsoft executive, and the co-founder of the Hydrocephalus Clinical Research Network (HCRN). Follow @

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  • http://www.hydroassoc.org Paul Gross

    If you want to see a short inspiring video of for people who suffer from hydrocephalus, you can find it here: http://www.youtube.com/watch?v=ZHm11hI-tz0 and if you need information about the condition, HA has what you need at http://www.hydroassoc.org.

    Thanks Luke for helping us get the word out during National Hydrocephalus Awareness Month.

    Paul

  • Lori

    To find out more about hydrocephalus some of the organizations mentioned you can visit:

    http://www.hydroassoc.org
    http://www.hcrn.org
    http://www.seattlechildrens.org

  • Evelyn

    Paul,
    Thank you for all that you’re doing to fight hydrocephalus. My son is 4 1/2 years old and has congenital hydrocephalus.
    Tomorrow isn’t fast enough to find a cure!
    Thanks!
    Evelyn

  • Pingback: Hydrocephalus | HA Chairman Featured in Xconomy.com

  • Peggy Owens

    Thanks for this story and your work. This really made my day to see how far you have come and the organization that has formed. Very impressive and takes alot of heart.
    My heart goes out to anyone touched by this and I applaud the work you are doing.

  • Mary Ann Madura

    Dear Paul,
    God bless you for your proactive work for this very important and little known about condition. As a grandmother of a almost 2 year old grandaughter with Hydrocephalus we understand your feelings and concerns. Keep me updated, please.

  • http://www.hydroassoc.org Paul Gross

    Thanks for all your nice comments. My work is very rewarding because of not only my son but all of the people like you and your loved one’s who are very supportive.

  • lisa

    You forgot to mention a dynamo of hydrocephalus advocacy–The Pediatric Hydrocephalus Foundation. They have worked to create a Hydrocephalus Caucus on Capitol Hill, with 17 elected officials currently members. This is a HUGE step for hydrocephalus. The first-ever Day of Testimony on the hill is this Friday, September 23! Speakers from all over the country have been invited!

    Contact the PEdiatric Hydrocephalus Foundation on Facebook or the internet for details, and copies of the testimony from this historic day!

  • Dawn Zielinski

    Thanks Paul and Lori!!! Desire and know how work wonders!! Katie’s Girl Scout troop is looking forward to fundraising for the WALK this year!

  • Erkki

    Keep pushing!

  • Murali

    Thanks Paul and Lori.
    You both are amazing

  • Danee Bellish

    Thanks Paul for your hard work bringing this to light. My son just turned 21 and for the past 15 years, went through 400+ surgeries relating to Hydro. Please continue to push for a cure! And continue to be the advocate for your children!

  • bridget huhn

    as an adult who has suffered with hydrocephalus all my life i want to say thank you we need a hero we need a cure

  • http://www.rareproject.org nicole boice

    Hello Paul and Lori,

    You are so inspiring. There are many other incredible parent advocates that are working to find therapies, treatments and cures for their kids. I would like to introduce you to our organization, and our goal of creating an alliance made up of rare disease stakeholders including advocates like you. My office number is 949.248.RARE (7273). I hope that we have an opportunity to connect and share very soon. Onwards!

  • Mark

    Hi Paul:

    As a 51 yr old with congenital hydrocephalus, I want you to know that some doctors paint a very grim picture for those of us with hydrocephalus.

    Do your research. Ask questions. Don’t be shocked if your child needs multiple shunt revisions over his lifetime. I’ve had 16, while others younger than me have had over 100.

    It all varies with the individual. Find a strong support network for your family and child.

    Good luck.