From Despair to Acceptance to Elation

IMG_3795This is a deeply personal story involving the most precious things in my life – my wife Renee and 18-month old son Jack.  Renee and I have been considering having another child, but at our ages the risks of complications and child health issues are increased, so we have been actively seeking out as much pre-pregnancy testing as possible.  One of the tests that was recommended by our fertility doctor was the Spinal Muscular Atrophy (SMA) carrier test through a simple, and relatively inexpensive ($99) at-home saliva swab kit, and many insurance carriers will cover some of the cost.  We’d never heard of the test or the disease.  It’s important you read about this horrific genetic disease before progressing, but a few key points:

  • SMA is a disease where certain nerves in the brain and spinal cord die, impairing a person’s ability to move.  In the majority of cases (Types 0, I, II) SMA manifests in infants and toddlers before the age of 2 and in most of these cases, death is the result.  The remaining cases (Types III, IV) result in various degrading movement levels and onset ages, but the majority of cases result in loss of independent walking capability sometime between 3 and 30 years of age.
  • If you are a carrier of the disease, you cannot contract the disease.  Renee and I were being tested as possible carriers, as given our ages and no physical symptoms, it is obvious we do not have the actual SMA disease.
  • Approximately 1 in 35 caucasians (where the disease is most prevalent) are carriers of the disease, so the likelihood of having two parents as carriers is roughly 1 in 1225.  And there must be two carriers of the disease to produce offspring that contract it.
  • If both parents are carriers, there is a 25% chance that the child will be born with the disease, and 70% of those children will die before their 2nd birthday.  The remaining 30% have a wide range of prognoses and outcomes, ranging from inability to walk sometime between 3 and 20 years old to death.  There is no outcome, if the disease is contracted, where the disease is dormant forever.  As I said, horrific.
  • There is no active testing protocol in place today for parents considering children or for the fetus during pregnancy.  This is shocking to me given the combination of contraction probabilities and severe outcomes if contraction occurs.  Because of this, the vast majority of parents do not know if they are carriers and the contraction of the disease in children or adolescents is only known once physical symptoms occur, which can be as early as birth and as late as adult onset (early 20’s).  Insidious.

Because of the lack of testing, parents and their children know nothing of this disease until symptoms show in the child.  But, our story is different.  Renee was tested early in January and received a positive test as a carrier of SMA, which we didn’t think much of outside of being a fluke.  Given her positive test, I needed to ensure I was not a carrier in order to guarantee absence of the disease in Jack and any future children.  However, on Friday, January 18, I received a positive test as a carrier of SMA, and our immediate thought was not about how does this impact our desire to have another child, but rather what does this mean for our 18-month old son Jack?

This moment began the most harrowing week of our lives as we waited for the genetic testing results from Jack’s blood draw.  An emotional journey through despair, intense and depressing research, mental preparation for the worst outcomes and finally, a focus on how to comprehend that our beautiful, strong son, who has zero symptoms of this debilitating disease, could degrade in physical strength and be in a wheelchair at any moment.  Or, it could take years to manifest itself.  It was this uncertainty – knowing if the disease was present, there’s no way to predict when symptoms would show or their severity – that we just couldn’t get our heads around.

Then we thought, should we even get the results?  How would knowing a positive test affect our interactions with Jack?  Would we treat him differently?  Could we as parents deal with the waiting, the imminent result?  We ultimately determined that knowledge was power, that a positive test would enable us to do everything in our power – time, energy and finances – to help our son.  And certainly a negative test would give us peace of mind, a selfish, but ultimately another important reason for us to know the results.

We cried ourselves to sleep for 10 nights, waiting.  Then, on Monday, January 29 our prayers were answered with a negative test for Jack.

Given our experience, and our dismay at the lack of proactive testing, Renee and I are going to at a minimum make a financial contribution and possibly get involved more deeply with Families with SMA, the non-profit association dedicated to research, funding and advocacy related to SMA.  We’ve been amazed over the past week at how many people have said, “yeah, I have a friend who’s child died from SMA” just within our personal networks.  It doesn’t have to be that way.  And we’d like to participate in the advocacy for a broader testing protocol.

Avoiding Complacency

This past week I sent the email below (verbatim) to my leadership team, not as a critique, but as a challenge.   I really find my own personal motivation goes in cycles and I have to fight through this issue from time to time.  The title of the email was the same as this post, “Avoiding Complacency”.

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Guys, I wanted to share a simple technique I use every week to ensure I’m staying motivated and focused on the right stuff.  To be clear, this is not a critique on our/your work ethic, commitment or anything else other than my normal “challenging” the team to stay awesome.  I recognize everyone is working hard. 

Candidly, one of the issues I personally have to wrestle with is avoiding complacency, becoming “comfortable” in my role and most important, losing a sense of urgency and paranoia that I believe is critical for any startup to succeed – the leadership team simply has to feel an almost overwhelming sense of urgency and belief that if we don’t get better fast, someone else is going to kill us.
 
One of the things I do every Sunday night before the week begins is to answer the question, in writing “In addition to all the crap already on my calendar this week, what am I personally going to do, this week, to move the needle for the company?”
 
We should all take this view and we should push our teams to take this view.  On a weekly basis, its not sufficient for us to “move our existing, albeit important, workstreams closer to completion”.  We each must actually accomplish something, each week, that is foundational to our success, that we can all see as a big step forward, that those looking in (investors, press, customers) would say – yeah, that’s big.
 
Now, is this realistically going to happen each week?  No, but it HAS to be a goal, a focus that each of us holds each other accountable to.  I want us to ask each other this question and I welcome you saying “Rob, what did you do this week to move the needle?”

Pondering Mortality

I celebrated my 43rd birthday this week, but this one was distinctly different – it was my first birthday as a Dad, and it really had me reflecting on the past year and particularly on the future in a very different way than past years.  My typical birthday routine is to enjoy a phenomenal cigar and an even more phenomenal glass of scotch while thinking about the past year and what I hope to achieve in the next year.  While the cigar, scotch and prior year reflections followed a similar routine, my thoughts, objectives and priorities for the future could not be more changed.  There were two key differences this year:

First, its not just about me and what I want to accomplish or what I want to do.  This is probably obvious to you who are parents, the birth of your child and the immediate and complete priority shift and sense of responsibility for their happiness and well-being become the leading priority in life.  But what really struck me and had me reeling (read: panic) a bit was the second stream of contemplation – the realization of my own age and it’s conflict with the longing I have to know my child into his old age.  To experience his adolescence, help him through heartbreak, watch him become the man he chooses to become, rejoice in his marriage and see his world change, just as mine did, when his first child is born and I become a Grandpa.  But wait!  I’m 43.  That means 60 at high school graduation.  What if he marries or decides to have children “late” in life like me.  That’s 86 at first child.  Ugh, you can see how this began to quickly spiral out of control as I began to hyperventilate with the cigar and gulp 19 year old scotch.

Then it hit me.  Quit being an engineer, trying to plan and predict your life and every outcome for those around you.  While we like to avoid thinking about it, let’s face it, there are dozens of causes, accidental or otherwise, for us to “go” at any moment.  Accidental death took my own father when he was just 36 years old (I was 9).  There is no better defense of “live in the moment” than when talking about loving and nurturing your children and breathing in all of the experiences, every day, that they bless us with.  The energy it takes us to worry, plan and predict is energy that can be channeled into our spouses, children, parents, friends and most important, our own happiness.  This is definitely a work in process for me, I’m not so good at it personally or professionally.

So my personal objective for this coming year is to be present for Jack, Renee and the rest of my family while also satisfying my own professional and personal needs.  And when I start stressing about my own mortality, I’ll just hammer out some miles on my bike, which I love, and visualize (but not stress!) being the healthiest Dad at high school graduation, even if 60 years old.

Back on the Grid

Wow, it’s been an extremely intense past 2.5 months in Startupland.  I haven’t written since December and I really miss the therapy in it.  Why no writing?  I’ve been channeling all my professional energy and mind share into working through a critical stage in my company’s development (which we are still in), and I’ve been hesitant to write about it transparently given the confidential nature of the issues I face everyday.  While I’m a huge fan of complete transparency, it’s not my place to share these details (despite my desire to do so), especially the unflattering, unsexy, fall-on-your-face realities of building a company when partners and customers have access to them.  So I’ve struggled with what to write about and in what level of detail such that its useful and insightful and, most important, so that others can learn from the tough stuff.

But I’m back!  And committed to striking a balance in what I share.  In the past 8 weeks, I literally have 20 topics listed that correlate directly to challenges, learnings, failings, big wins and the emotional roller-coaster that is my life right now.  I can point to several days when I had feelings of unsurpassed confidence and outright despair – in the same day!

I’m anxious to share more and will over the coming days and weeks, at least once each week.

So Much to be Thankful For

2011 has been an amazing year for me, personally and professionally, at least that’s the way I choose to see it.  As I wrote in a previous post, I’ve been through the gamut of life events this year.  Marriage, baby, new job, cross-country relocation.  But as I reflect it all boils down to this – I’m happy.  I have an amazing wife, a healthy new child that is making me a better person, and a new stimulating role at BlackLocus in a city that I love – Austin.  I also have all of the things I had before!  A wonderful and loving extended family that has always given me unwavering support through the good and bad.  Finally, for the first time since childhood, I live near my brother who has two young children.  I feel truly blessed that we can be close and I can build a relationship with my nieces.

So today, like every other day, I’m thankful.  Happy Thanksgiving!

Texas Venture Labs / Austin Technology Incubator

My new company, Blacklocus, is an Austin Technology Incubator (ATI) company and we presented yesterday at the Texas Venture Labs Expo in Austin.  I stopped by to hear the pitches of 5 graduating companies, including ours.  I was deeply impressed by the presenting companies, at least 3 of them are truly innovating massive industries including online commerce (us!), nuclear power and combustion engines.  These programs are examples of increasing efforts by the University of Texas to integrate with the local business community to develop entrepreneurs, facilitate investment and commercialize research generated through the University.

Now that we are fully relocated to Austin, I’m really energized to get more involved.  There are several objectives I have for “getting involved” with the local entrepreneurial technology community:

  • Build the BlackLocus brand locally through thought leadership, mentoring and recruiting outreach.  The more we promote our vision and progress, the more attractive we will become to partners, customers and employee candidates.
  • Do my part to further entrepreneurship and development of high growth companies in Austin.  This community has so much to offer for entrepreneurs, venture investment, existing companies looking to relocate and I’d like to become involved in initiatives that promote and actualize those attributes.  Capital Factory and Startup America are examples of successful and far reaching programs to promote our city and develop successful new companies.  There is a real talent shortage here, as in many high tech hubs across the country, and it really is a zero sum game that we need to solve.
  • Actively invest in promising high-growth startups.  As I’ve written about previously, I’m active but picky in my search for investments in new companies where I have something to offer in addition to capital.

Yesterday was a great introduction to a few programs dedicated for furthering local entrepreneurship and I look forward to becoming far more integrated over the coming months.

The Eagle Has Landed… In Texas

After an adventure that resembled something close to Chevy Chase’s Vacation, although no Christie Brinkley tailing us in a Ferrari, we finally made it to Austin.  Baby Jack did pretty good save for a few end-of-day meltdowns.  We made it manageable for him by capping our daily mileage to 425 miles over 4 driving days.  Now we have to hang out until Saturday when the movers arrive to relieve us of Inflatable Mattress Back Syndrome.  Finally, I’m looking forward to settling in to my new role as President of Blacklocus next week!

A sad note, unfortunately we lost our beloved Shetland Sheepdog Jackson during our stopover in Scottsdale.  His health had seen a rapid decline over the past month and he got to the point where he couldn’t keep any food down, so we had to say goodbye and send him on his way to the Rainbow Bridge while we were in Scottsdale.  Jackson was a faithful companion for Renee over the past 10 years, he will be missed.

Klaus and Jackson hangin' at Venice Beach

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