The idea for PKU World Link was dreamed up late one night in June of 2003 when I was driving from Ottawa to Kingston, ON, Canada. I was on a lonely stretch of road listening to game 4 of the Stanley Cup Finals between the Anaheim Mighty Ducks and the New Jersey Devils on CBC radio. Since it was dark, I couldn't see beyond the narrow scope of road the headlights of my rental car indicated was ahead. My mind began to wander and I began to wonder, as I sometimes do, if there was only one else in the area that I was traveling in that night who has PKU like me.
Except perhaps those lucky enough to have at least one sibling, if not more, who also has PKU, I think most people who have PKU, at one time or another, have felt like they are the only person in the world who has PKU. I thought that it would be great if there was something that would help people with PKU find each other and help them know that they are not alone.
The next day I posted a message to the PKU listserv entitled "Where are you from?" from my hotel room in Kingston. I asked people to let me know where they live and I would plot the responses on a map so that people could see where else in the world others with PKU live. I was quickly flooded with responses from all over the world from people with PKU and parents of kids who have PKU. I wasn't alone in wondering if I was alone.
During that time period, I was spending much of my free personal time working with Trish Mullaley to organize the first International PKU Teen Adult Conference in the US that was being held in July. I stated in my email to the listserv that I would plot the responses on a map for display at the conference. I purchased a 13 foot by 8 foot map of the world and plotted the responses. The map was put up at the conference and I think it was appreciate by everyone who looked at it.
Realizing that not everyone could go to the conference, I also stated in my email to the listserv that I would create a website so that everyone would have a chance to see where others who have PKU live. My one problem was that I am far from a computer expert and I had no idea how to even begin to go about creating a website. I received a few suggestions/offers from members of the listserv to help create the site. When I was in St. Louis, MO about a week and a half later I met in person with Ed Madden, the father of two sons who have PKU. Ed is a graphic designer and he offered me suggestions and help in creating the website.
Between being busy with work and much of my free time being taken up by preparing for the conference, the idea for the website took a back burner. Shortly before the conference took place, I had a rare free day and I needed a break for the a day from doing something related to PKU, so I went to a "painting party" and helped a friend who was soon opening a fitness studio.
I have met a lot of my close friends through my love of college hockey. They all know I have PKU and are supportive of me and my diet. They don't care what I eat, they just care who I cheer for when the University of Maine plays Boston University and when Boston University plays Boston College. (The answers, in case you are wondering, are Maine and Boston University, respectively.) Due to my travel schedule, I hadn't seen most of them in a while. We used the time spent painting to catch up on what was happening in each other's lives. I told them of my travels and the upcoming conference. In passing, I also mentioned the map and wanting to create a website. One of my good friends, Lisa Weener, was also there that day helping to paint.
One day in early September, I opened my email to find a message from Lisa. The message was a link to a late birthday present for me. Lisa had created a page that would eventually become the website you see today. Everything has changed from the one page that Lisa sent me but her gift and her thoughtfulness behind it has not. In addition to the gift of the page, she taught me the basics of how to create a website so that I could develop what I imagined on that lonely road stretch of road somewhere between Ottawa and Kingston while listening to game 4 of the Stanley Cup Finals.
Sarah Foster
