Monday, September 14, 2015


Is it literally possible to have more passion?  I am here to tell you.  Yes.  Yes it is possible.

I always felt passionate for my kids, my family, my work, being athletic, etc.  I never really charted out on paper where to direct that passion.  I stumbled upon great ways to take all those thoughts in your heart and your head and direct them in a certain direction.

There are two things that made me realize that you can turn passion into tangible actions and results.

1.) The Passion Planner


2.) The book Creating Innovators by Tony Wagner.

I have a 10 minute commute each day from dropping one of my sons off at school to work.  One day last November, I caught the "What's Trending" segment by Carla Marie on Elvis Duran and the Morning Show.  It's actually right here:

I love to look at my home and work schedules in one month views.  I bought the Passion Planner then set my passion to work.  I dove right into creating "mind maps" in the Passion Planner.  It is a great tool for plotting out what I really want in one year, 3 years, my lifetime, etc.  I had used mind maps a lot but never on some of my own personal goals.  Here's what I wrote for the One Year goal (yes I wrote in pencil, ha ha!):

The Passion Planner calls this a "Game Changer".  Then I took that goal and popped it out further. One of the branches of the Mind Map looked like this:

This was only one piece of my mind map.  I brainstormed ideas for getting my kids involved in sports, how to help Alex (my severely affected son), how to be more fit and healthy myself, etc.  In my overall 1, 3, 5 year, and lifetime plans I have other goals like Financial Health, Luxuriating Our Home, my career, etc.

I look at these goals every week incorporating them into my daily, weekly and monthly activities.  Thus our recent launch of our non-profit,

Why do I have a 1 year goal to have a healthy family when my kids have a fatal, rare genetic disease?
Doesn't seem very smart now does it?  You can sit and wait for someone else to save you; a pharmaceutical company, the U.S. Food & Drug Adminstration (FDA), the National Institute of Health, etc.  They may not make it happen, and they certainly can't do it alone.  You have to have a part in your own destiny. We have to take part in doing something. Our kids are counting on us to do something. Our young children's lives are counting on us to do something to help them.

When Alex was diagnosed with Hunter Syndrome at about 18 months old, we were given choices.

  1. Treat him with Elaprase knowing that it cannot pass through the blood brain barrier to treat his brain and central nervous system (CNS),
  2. Try a Bone Marrow Transplant but that carries the risk of morbidity and may not also be effective enough to produce enough enzyme to keep his brain and CNS healthy, 
  3. Try to get into a clincial trial just starting (the Intrathecal Trial that Nick is in today) while treating him with Elaprase. 
There were other choices like do nothing, etc. but above are the main three.  

We made both the right and wrong choice.  At the time, data indicated that we were possibly facing a mild gene mutation but couldn't be sure.  75% of kids with Hunter Syndrome face Central Nervous System involvement so we knew that as well, so CNS is going to need some support.  We met all sorts of kids who on the surface looked like they were doing well, and some severe.  We decided to treat with Elaprase but discussed involvement in the trial but didn't pursue it fast enough.  By the time we called, Phase I was full and it was moving into Phase II where it would have stiff IQ testing requirements.  So, here we are. We didn't have any experience with clinical trials.  The safety phase just seemed too scary.  We made the wrong choice for Alex, and because of it he is suffering more, and it could shorten his life span.  We made a life altering choice.  It sounds like I am beating myself and my husband up but we made the best, supported decision we could make at the time and hindsight is always 20/20 as they say.

For every negative reaction there has to be an equal and opposite action (Newton's law).  We have to fill the pipeline.  We have to support research, we have to support current progress in gene therapy. We have to fill the pipeline with treatments for all kids with MPS, including Alex.  This is the reason for the launch of our non-profit.  We have to do it.  We have to do it for Alex.  It's the only way to right our failure.

Then this summer I read Creating Innovators by Tony Wagner.  I saw this book through discovering the AltSchool in San Francisco. They have a recommended reading list ( What an amazing little trail, to find a great book.  If you are looking for how to raise young innovators, you like education reform, or are against standardized testing this is the read for you.   There are a ton of take aways for parents, e.g., offering a buffet of interests to your kids.  You can use a lot of the suggestions at work and in the corporate environment too.  The entire summer I fostered a boring environment.  My oldest son went to Invention Camp and then I bored him the rest of the time to facilitate him making things in my house, exploring nature, golfing, playing baseball and fishing like crazy. Let's call this Project Bored-Him. No offense to his babysitter (she was on board with the mission) and Invention Camp was amazing! He loved it! The other thing that this book taught me was about the differences in people who are innovators, how differently they think and what innovation needs to thrive.  It helped me further organize our passion for saving kids with Hunter Syndrome.  No one should have to live with the MPS/ML diseases they are terrible, hands down.  I thought about one quote from the book every day for a whole month about sometimes when we're trying to prevent something bad from happening to our kids, or protecting them from something bad, we might not be able to prevent it at all (that's major paraphrasing) and we shouldn't let that get in the way of their experiences. I think our kids will have their lives shaped from living with this disease and how we've dealt with it relatively positively. What if I can't save my kids?  What if there isn't enough time to save them?  That weighs on my mind but we have to push forward, standing still doesn't feel like the right thing to do.  Throughout the book, it talks about Passion, Purpose and Play.  I think our Long Drive II Survive competition that we started last year embodies just those principles! That's why last year it was so fun, and we hope to keep it going annually!

So off we go launching into our new non-profit; our success will be measured in lives saved, lives improved, and lives touched.  So now you know, why now.  This is why, and maybe some of the tools the Passion Planner and this book can help you too.

Amy & Her Awesome Family