Thursday, November 17, 2011

Baby You're A Rich Man

How does it feel to be
One of the beautiful people?
Now that you know who you are
What do you want to be?
And have you travelled very far?
Far as the eye can see. 

Baby you're a rich man, 
Baby you're a rich man,
Baby you're a rich man too.

This time of the year offers an odd mix of Christmas joy and New Year's anticipation. You'll find the rare station still playing classic Christmas carols, trying to retain the warmth of the season, while at the same time racks covered with paparazzi magazines listing the best things of 2011.  You'll find lists with the best news stories, best movies, best celebrities, best looking, the best scandals, and the best scoundrels. One list that never misses attention is the richest people.  

We list those who have the most family wealth at the end of 2011, those who were paid the most money in 2011, and even those that lost the most money in 2011. Some of these stories are meant to make us feel good and others are meant to make us upset.  In these times of economic struggle we must find it satisfying to stand on the side of the good rich (aka Steve Jobs) and against the bad rich (aka anyone who works on Wall Street).  I'm not sure this makes anyone feel any better on January 2nd, but such is life.

One thing missing from the list is a definition of the word "rich". Merriam-Webster defines it as "having abundant possessions and especially material wealth".  This is easy to understand.  Dollars and cents are simple to count and compare.  When we think rich we think Bill Gates, Warren Buffett, or some movie star relaxing on a beach in the French Riviera.  I propose this is only a partial definition of the word.  Perhaps there is more than meets the eye.

A few weeks ago we were invited to Amicus Therapeutics to speak about our experiences with Pompe disease.  Amicus ( is a biopharmaceutical company, lead by John Crowley, which is working on pharmacological chaperones for the treatment of genetic diseases.  The science is much more sophisticated than I can detail, but the idea is chaperones will bind to a protein to increase its stability and increase its activity.  For Pompe patients, these investigational drugs may one day be used in collaboration with Enzyme Replacement Therapy to heighten ERT's effectiveness in the body.  In other words, if the product is successful, our girls will receive the same ERT via IV therapy, but hopefully each drop will work a bit better than today.        

We've done these types of events for the MDA, CHOP, and others before, so we quickly agreed.  Any opportunity to tell our story and meet others living our life or working to improve it is time well spent.  So, we loaded up the car and drove to Amicus's offices in Cranbury, New Jersey.  We received a warm welcome by members of the staff and were set up in a big conference room just in time of lunch.  Before we knew it, the food and the employees starting rolling in.  You never know how many people might attend these sessions, but we were lucky enough to have seventy employees. Working for corporate America myself, I know how tough it can be to get a few people away from their emails and meetings, so we were honored.

I started off the meeting with a few slides highlighting our story, our learnings, and our hopes.  As soon as I began to talk I couldn't help but move around the room, test out a few one-liners, and make sure my message was as clear as possible.  I was in "work mode", trying to engage the group and make sure their time was well spent. However, as I continued I didn't see people checking watches and Blackberries as is so common in today's fast paced business environment.  Rather, I began to see emotion.  In the midst of a never-ending focus on quarterly financials and clinical trial schedules, they were remembering the reason why they chose this profession.  They are heroes to people who look to science to bring solutions to their loved ones facing disease.

After I finished my presentation, I invited Emma, Maddie, and Carter to take questions. To ease any concern about asking prying health questions to teenagers, Emma stepped up, spoke about her love of public speaking, and her interest in answering anything and everything about life with Pompe.  The crowd seemed to relax and the questions began.  

"Where do you receive your treatment?" 
"Do you find yourself getting weaker or stronger?"
"How do you cope at school?"
"What do you tell your friends about Pompe and what do they think?"
"What is it like to be a brother with two sisters affected by Pompe?"
"How do you plan to transition to college?"

Donna and I chimed in here and there when necessary or when the questions were directed to us, but we tried to let the kids do their thing.  For most of the time, I just sat back and grinned with pride.  

Toward the end of the session, a man raised his hand so he could ask a question. Before he did, he stood up and told us that he too had three kids.  One was a teenager, one was a bit younger, and one was soon to be born.  His voice began to quiver as he said his wish was that one day his three children would be as strong and as close as those he saw before him.  The power of his statement hit me as I looked at our three kids.  Two years ago their world was rocked and now they are standing confidently together fielding questions and displaying their commitment to each other. "Wow!”  

We finished off the meeting with a bit of dessert, a chat with some of the attendees, and a promise to stay in touch.  Just like other events before, I hope we left behind just as much value as we gained.  As I look back, I realize this day offered much more than I expected.  It's been a crazy couple months as I've scurried around trying to finish this task and that task at work.  The busy time has kept me away from some of the things I love such as this blog and made me focus too much on the short term issues of finance and quarter end results.  Looking back, I remember that while all those things are important, they are fleeting.  Just like the definition of "rich", the definition of "life" is so much deeper and so much more fulfilling.  

So, as this year comes to a close you can spend some time searching if you wish, but I'll save you the time.  You won't find me on any of the Best of 2011 lists.  I haven't starred in a top 10 film, been rated as the most beautiful, or been named the richest guy in America.  However, as midnight approaches and 2012 is rung in, I won't be worried by any of it.  Instead, I will be spending the time with my loved ones, counting my blessings, and thinking of the day we visited Amicus and heard the kind words from another father, who saw our children proudly standing together, and remind myself once again that...

Baby you're a rich man,
Baby you're a rich man,
Baby you're a rich man too.

Happy New Year!

Credit to: The Beatles, "Baby You're A Rich Man"


  1. Your family is rich with love, strength, and passion. When you hear that someone hopes his family is someday as wonderful as yours, remember that there are many who feel as he does. I'm very proud of the PA Crowleys! And Matt, as far as you not being on the best looking list, there's not enough room for you and Carter on it. Maybe next year.

  2. Oh, Matt, you've done it again! As I write through the fog of my tears, I can only think that we indeed ARE the richest people in the world. Peel away all the layers of "stuff" and what really matters? The pride and love we have for our kids...nothing is worth more than them.

    You and Donna have been wealthy since the day you met. You knew it from day one and look at what riches you have before you! Three amazing kids with hearts larger than life. It didn't happen because of Pompe...they already were these beautiful souls. This crazy 2 year journey has just served to solidify what was already firmly planted in Emma, Carter and Maddie...character, strength, compassion and most certainly love. Plain old money could never buy that.

    Baby brother, you are one of the richest men I know.

  3. You don't have to be cool to rule my world