My Hope for Tyler’s Hope

Posted by on May 28, 2006 at 7:31 am.

In the venture business we’re often focused on very large numbers — we invest millions of dollars, at million dollar valuations, tapping billion dolars markets, in hopes for millions or billions of return. This post is about a smaller number, closer to home: one. One smart, funny, athletic 7-yr old boy named Tyler Staab.

I got to know Tyler and his family when he was a classmate of my daughter Delaney a few years ago. Even at that young age, classmates fought for his attention because he was so likeable. His golf skills were already showing at a young age. He was a rabid Gator fan. We played basketball together and he had a mean outside shot.

Everything changed February 2005. While practicing basketball with his father, Tyler started having a hard time bringing his arm in without it shaking uncontrollably. Visits to UF Shands and other nationally renowned hospitals led to misdiagnosis, confusion and frustration — especially for Tyler. Finally, a visit to Dr. Michael Okun yielded a diagnosis of Primary Generalized Early-Onset Dystonia, and a test for the Dystonia Dyt1 gene confirmed it.

Dystonia is a neurological movement disorder affecting the central nervous system characterized by involuntary and often painful spasms of the muscles. The disorder currently has no cure and progressively robs one of the ability to control voluntary movements and even the ability to walk. The earlier that a child shows symptoms of Dystonia, the more significant those symptoms become — and it can happen fast. Within 9 months of that shaking arm, Tyler required a wheelchair and will likely be permanently disabled within 5 years of onset.

Tyler’s brain is as sharp as ever. He’s in the 2nd grade gifted magnet program, but even his learning is at risk because most days his hands are so spasmed he cannot write papers or take tests. Tyler and his family are hopeful that will change for the better in June of this year.

Tyler will undergo surgery on June 14, 2006 for Deep Brain Stimulation (DBS) to stop/slow the symptoms — but it won’t cure him. As an investor, I’ve reviewed a few early-stage DBS companies that insert electrical probes into the brain — scary stuff. Tyler will be the youngest person in the world to receive this surgery for his diagnosis. Delaney has already bought Tyler’s “Get Well” cards. We hope the surgery is a success and it helps, but the longterm options are unclear as Tyler’s body and head grows.

You don’t know Tyler yet, but get to know him at www.TylersHope.org — a foundation created to help raise awareness of the disease, speed diagnosis and find a cure. In addition to information on Dystonia, some Tyler’s Hope products and Tyler’s million dollar research fundraising goal, Tyler’s dad has started a “Progressional Diary” that shares what Tyler is experiencing. Take a look and help if you can.

In a business where curing big diseases for big markets can deliver big returns, we often miss the one person we help through investment. Here’s a chance to help and know who you are helping. I hope you will. Tyler, for one, would appreciate it…

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