Feature Story

It’s not uncommon to hear Doug Craig make wry, offhand remarks about his disability, or to see him zipping around Jersey City on his mobility scooter with his dog, a Bernese Mountain mix named Gracie, in tow. Despite his sense of humor about it, he suffers from a disease that has been slowly debilitating him through his life, making simple things, like raising his arms above his head, impossible.

Facioscapulohumeral Muscular Dystrophy occurs in about 12 in 100,000 births. Someone diagnosed with it will slowly lose muscle strength in their face, upper arms, and abdomen, though it also can impede one’s ability to even walk. Many, like Craig, were diagnosed in their teens, meaning that they would live with this illness hanging over their head as they aged. 

“If you were to ask actually what a muscular dystrophy is—they’re diseases that involve the progressive loss of skeletal muscle strength because of the progressive dying-off of skeletal muscle cells,” Craig said.

Though it’s the most common manifestation of muscular dystrophy, it has minimal amounts of research and funding devoted to it, unlike many other genetic diseases.

Craig has a plan to change this. 

For several years, he has supported the FSH (Facioscapulohumeral) Society, a group that funds research for his type of muscular dystrophy. 

“Although I’ve been a supporter of them,” Craig said, “that mostly meant I’ve just made contributions to them, I’ve never done anything to actively raise money, so I thought it was about time I’d do that.”

Craig will do this by simply making a coast-to-coast journey from Manhattan to Seattle on his mobility scooter with Gracie in tow. 

“I came up with this plan to go across the country to raise money because I thought that it’s a difficult sort of thing to do and it might attract enough attention,” Craig said. “There are two purposes to the trip, one to raise money and another to raise awareness. And I think that as awareness increases the donations will increase as well, and fundraising, per se, is gonna be based on social media engagement and conventional media engagement.”

This might seem like a lofty goal, especially for a man who has to get around using a scooter at all times, but after talking with Craig about his plans, it’s clear that he’s put a good deal of thought into his plan. 

“The idea will be that we average about 25 miles a day where I can and stop at different hotels along the way,” Craig said. “There are still a lot of details to work out between now and April, but I wanted to not wait until everything was solved before I started to publicize it, because that would be valuable time lost.” 

Craig has started a website for the project at dougngracie.com, and has made accounts on several social media platforms with the same handle to prepare for the live-blogging, tweeting, and Instagramming of his journey.

Craig even sent a letter to the company who makes his trusty mobility scooter, Pride Mobility, asking them to sponsor his project. He also asked them to donate to the FSH Society and for the input of some of their engineers on the best way to construct a side-car for Gracie when she’s not running alongside him. 

“I said in exchange we would be happy to advertise on the website and if they wanted to have media events along the way we’d be happy to participate in those as long as they didn’t obscure the main objective,” Craig said. 

Craig has recently received word from Pride Mobility that they would be happy to sponsor his trip, as well as provide him with a different scooter model that would be more suited to the rigors of the journey. 

While Craig's trip is relatively unknown at the moment, he has plans to seek out interviews with news outlets across all types of media. The goal is to rouse enough interest to get his trip funded as well as to donate as much money as possible from donors from individuals, organizations, or companies to the FSH Society and the research programs that they fund. 

“The hope is that the novelty of it will raise interest for some,” Craig said, “and for dog lovers the interest will be in hearing about Gracie’s exploits across the country. I’ll also drive interest towards the website where people can go donate money to support the trip and read the blog posts.” 

Already, Craig has been gaining support on Facebook, and more and more people are hearing about his trip as his friends share his posts about it to their friends. 

“I’m happy to support Doug’s project,” Craig's college friend, Rob Dye said.  “He’s been a good buddy of mine for a long time, and he definitely has the sorta conviction that someone needs to go through with something like this.” 

Craig has been planning his route through Google Maps by using guides created by long-distance cyclists, and he plans to kick off the three-to-four-month journey sometime in mid-April. 

“I’d like to have it launched either at Good Morning America or the Today Show. If I can arrange that,” Craig said. “It sounds like the sort of thing that they might be able to get behind if it looked like something that was well-planned and like it was going to actually happen. So if I could demonstrate that I could go out to Pride [Mobility] and that might demonstrate to them that I’m serious.”

While to many it seems like a pretty idealistic idea, Craig's friends and family are all on board.

“It’s great to see Doug getting out there and doing something that’ll ultimately help people who share his disability,” family member Steve Allison said. “I really admire him for doing something that, you know, so many people would say ‘Wow, there’s no way this guy’s gonna do this.’”

While Craig sometimes has his doubts about whether he will be able to ultimately achieve this, he said that the more he talks about it to people and the more progress he makes on his sponsorships and plans, the more confident he becomes. 

“I think part of the commitment is discussing it and telling people you’re going to do it, because the more you do that the more you feel committed and the worse you feel about backing out,” Craig said.

In the most ideal circumstances, Craig said that he would like to have something that could raise awareness for FSHD in the way that this summer's phenomenal Ice Bucket Challenge raised awareness for ALS, increasing donations to research exponentially. 

“I think that that was an anomaly and it’s hard to predict the way in which somebody will achieve that next time. I don’t think I could predict it,” Craig said. “And it’s not about elevating it to a position of more-prominence, or more-importance than some other disease,  it’s about making sure it’s included on the list of those things we care about solving.”

“Aside from the doing it for the business purpose of raising money,” Craig said, “it’s gonna be a great adventure to see the whole US coast-to-coast, not going through 80 miles an hour on the highway, but going at 8 miles on a scooter through the countryside and talking with and meeting people along the way, taking photographs and video along the way… It’ll just be a wonderful adventure.”