Read Phillip's Story

“All you have to decide is what to do with the time that is given to you.”

At 10 years of age, I discovered I was the lucky recipient of Friedreich’s Ataxia: a rare disorder that picks off nerve cells until I die. My life expectancy is 30 to 40 years, I am currently 23.  Friedreich’s Ataxia has put me in a wheelchair, hindered my ability to speak coherently and makes it difficult to perform every day tasks.

I have a choice to make; roll over and die or make the best of the time that I have.  I am no quitter so I choose to live life to the fullest.  In spite of my wheelchair-dwelling, I choose to live an active life by participating in the activities that are available to me. I joined the shot-put and discus squad on my high school track and field team. My distances were pathetic compared with my team-mates’ but I never gave up and my team-mates cheered my personal records with more enthusiasm than their own. I have taken advantage of the Disabled-Sports USA programs which has allowed me to participate in adaptive skiing in the winter, and water skiing in the summer. I have even jumped out of an airplane strapped to my sky-diving instructor to experience the most extreme thrill available to me.

I have helped myself and others by raising $200,000 toward a cure for Friedreich’s Ataxia through the SOFA (Sunset on FA) event.  I have been a Muscular Dystrophy Association (MDA) local Goodwill Ambassador.  I will graduate in May 2008 with a degree in Journalism from San Jose State University.

I may not have much time left, but I can still leave a lasting impression on the world through my actions.  My goal is not to change the world single-handed, but to motivate and inspire others to help me change it.   This is what I have chosen to do with the time that is given to me.