My original concept was to come up with an event that would raise awareness of and research funding for the most prevalent form of muscular dystrophy: facioscapulohumeral muscular dystrophy, or FSHD. Since my own strength has been declining over the past decades, and I can no longer walk, another objective was to create something of a physical challenge that might be fulfilling in the way that sports used to be. What I came up with first was a cross country journey on my scooter, coast to coast, from New York City to Los Angeles or Seattle. After a few months of organization and preparation and plotting out a precise route, I was convinced by my wife and others to begin with a less ambitious goal. This would be a shorter trip that would allow me to evaluate the suitability of the roads and paths identified using Google Maps selected for bicycles and to see what it would be like travelling with Gracie. In addition, we could use a shorter trip to figure out the role of the support van for our trip and to see if the batteries would perform consistently, providing a reliable travel distance day after day. Finally, a shorter trip would allow me to assess my own stamina for repeated days of long distance travel on a mobility scooter. Therefore, we made the decision to aim for a east coast trip: New York City to Washington DC.
Several others expressed some concerns about the feasibility of such a trip, even a short one. Since I was aiming to do this as a fundraiser, I also wanted to convince myself that I could finish what I started. I didn’t want to ask people for donations or money to support our expenses only to discover that I couldn’t handle more than two days of travel. So before even putting together the idea for fundraiser from NYC to DC, I wanted to do a shorter trial run, a test of concept. In early June, with the help of my long time good friend from Austin, Rob Dye, who drove the van, we completed a 5 day trip from Central Park in NYC to the Liberty Bell in Philadelphia. It went very well, except for some delays imposed by the severe thunderstorms the first couple of days. Gracie accompanied me for an average of 8-10 miles per day, and otherwise rode with Rob in the van. We travelled between 25-35 miles each day and found dog-friendly hotels along the way. In fact, to save some money, we drove back to my appartment in Jersey City on the first two nights. On the last day, I was in good enough condition to do some sightseeing in Philly and drive the van back home in the evening. So, I’m certain that I can and will complete the trip to DC.
The route for the NYC to DC trip has been plotted out and can be seen on this page (see the Route). Pride Mobility has agreed to sponsor the trip by providing equipment, parts, and maintenance along the way if necessary. I’ll be contacting other potential sponsors in the nest couple of weeks to look for additional support: Chewy.com for dog food; GoPro for a video camera; and Best Western Hotels to name a few ideas. Finally, I will boldly go where I have to in order to find supporters and helpers. I may ask YOU, so be prepared.