Elizabeth Terry Takes the Reins


Elizabeth Terry Takes the Reins - Becomes PXE International's Second Executive Director
Text of acceptance speech delivered at the 15th Anniversary Gala and Conference, September 10, 2010


Fifteen years ago my parents converted my playroom into an office. I have only one memory of it as a playroom and every other one is of my mother hard at work at an ancient computer. Whether there were rabbits hopping around the floor or children playing computer games, it was a place to be excited about. Even my 7-year-old brain knew that.

Now, at 22, I’m beginning to understand why that room was so important and how it felt for them to commit their lives to this cause. PXE changed my life the day I was diagnosed and every day since. I owe this disorder my passions in life. It quite literally showed me the world. In the last 15 years I’ve been to 26 countries. I had the unique opportunity to meet thousands of patients and doctors from all over the world. I observed their interactions and heard their stories about diagnosis, living with impairment, and loss. We adopted them into our family and slowly this little unit of 4 became a collection of thousands with a common purpose.

For all the things PXE has given me, nothing is more valuable than the lesson of commitment taught to me by the tirelessness of my mother, the ingeniousness of my father, and the constant tide of this population. I feel the distinct need to serve this community and I am lucky enough to have the access to do so in a meaningful way.

I believe that PXE International is ready for a reinvention. 15 years is a long time and a lot has changed since those first years in the playroom. We came into our own as an organization. I grew up with it as if it was another sibling, another parent, another teacher. The family that grew up around us has been more transformational for me than any other experience of my life. It has been a blessing. I often find it hard to vilify the symptoms of this disorder because they have caused so much more than health issues. They have been the passkey to more extraordinary things that I ever could have imagined.

So it is with sincere appreciation and understanding that I accept this responsibility to follow in my mother’s far grander footsteps as Executive Director of PXE International. Over the next few years, I hope to discover what we can do to better serve this growing, changing, and remarkable family. Thank you.