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ALS Heroes: Craig Colby

6 months agoAlex Wilcox

As a part of Major League Baseball’s inaugural celebration of Lou Gehrig Day on June 2, Marquee Sports Network is proud to work with Project Main St. and the Chicago Cubs to share the stories of ALS heroes. These heroes have taken on the illness with strength, hope and determination – eager to raise awareness and funds so that ALS can finally be defeated. For more information on Project Main St. and to make a donation to help these heroes and others being inflicted with the disease, please visit https://projectmainst.org/about-us/.

Craig Colby, diagnosed with ALS in 2008, does three things everyday – he wakes up, he laughs and he fights. None of it is easy, but for Craig, it beats the alternative. As Craig puts it simply, “I have found that living with ALS is a lot better than dying of ALS.”

Step 1 – Wake up.

For most people, waking up is taken for granted, just a start to another day. But for someone with ALS, having the opportunity to wake up every day for 13 years following diagnosis is a blessing.

Craig’s diagnosis journey began on his 32nd birthday when he was inspired to buy a gym membership. On his first day at the gym, he found difficulty raising even a 10-pound weight over his head, a suspiciously difficult task given he considered himself a healthy man in his early 30’s, taking pride in his nearly-scratch level golf game.  

Over the next year-plus, Craig and his wife, Kristen, traveled from Delaware to practically every doctor in the northeast, trying to figure out any cause that could explain these physical ailments that were becoming more present. They were given false diagnoses, treatments that did not work and theories that did not pan out until ultimately finally being diagnosed with ALS on October 1, 2008.

While every day since has been a fight, Craig has been an anomaly in the fight against a disease that offers a typical life-expectancy in terms of 2-5 years.

“13 years later and he’s still kicking ALS in the hind quarters,” says Kristen.

Step 2 – Laugh.

Compared to waking up and fighting, laughter may be the easiest part of the day for Craig as he has always had a great sense of humor despite being dealt a rough hand.

Just six months after being diagnosed with ALS in October of 2008, the Colby family received a call that their house was on fire.

“We rushed home and flames are shooting out of our roof,” says Kristen. “There’s a dozen firefighters on our roof and all of our friends have shown up. Craig just turns around, looks at the bonfire and says ‘F—, I forgot the marshmallows.’ That was the levity of the situation needed. We’d already gotten the worst news of our lives six months prior. What can you do at this point? From that day, it’s always been that attitude.”

The Colby family notes that they certainly have their bad days and their dark days, but they work together to get through it and are holding strong.

“I take my energy from Craig and absorb his bad days, and I feel like he absorbs my bad days. So, I think we have a pretty good balance,” says Kristen.

Step 3 – Fight.  

Fighting against ALS could be considered a nearly unwinnable battle. There remains no cure, yet Craig remains steadfast in his efforts to ward off the disease as long as he possibly can, a fight in which is he succeeding every day.

But what makes the fight especially worth it for Craig is that he is not just fighting for himself. Through his advocacy and charitable work, he’s fighting even harder for others.

Following his diagnosis with ALS in 2008, Craig and Kristen went straight to work.

“We shed a couple tears and then we said what can we do and how can we fight. There was a walk at the end of that month and we raised over $10,000 in a month for the greater Philadelphia ALS Association and that’s been our attitude ever since.”

The Colby family has become intertwined with Delaware politics and the legislative process, meeting with every elected official in Delaware to push for more awareness and legislation that benefits those living with the disease.

And perhaps most importantly, Craig and Kristen are also on the Board of Directors for Hope Loves Company, a group dedicated to providing support for children of those impacted by ALS, including care packages and weekend retreats, and through which they have started a college scholarship fund called “Colby’s Crew 4 The Kids,” with the number four being a nod to Lou Gehrig’s number with the Yankees.

The Colby family was able to award its first scholarship through the program last year, and through generous fundraising, the couple has raised enough money to be able to fund five more scholarships this fall.

“We’ve always wanted children, and we weren’t able to have our own children, but we’ve always loved kids and we’ve always wanted to help them,” says Kristen. “From the very beginning this is something he’s always wanted to do so when the opportunity arose we jumped at it. We’ve really been fortunate by the people’s support that we’ve been able to raise money and help send our first girl to college.”

It’s these moments of happiness and opportunities to make a difference that makes the fight against a terminal illness worth it.

“I don’t know anyone who is mentally ready to be told that you have a terminal illness, but you can still live with this disease and still create memories of positivity and memories of happiness, and you don’t have to let it take you out and decimate everything.”

And speaking of happiness and creating memories, there’s an unspoken fourth thing that Craig does every day.

Step 4 – Watch baseball.

Craig is a massive baseball fan and will be in attendance at Yankee Stadium on Lou Gehrig Day this season as the Yankees host the Rays. While Craig and Kristen are both Red Sox fans, any opportunity to watch baseball is a blessing and it was a Yankees game years ago in which they first met Jon Sciambi and were introduced to Project Main St.

Offered the opportunity to go onto the field before the game, Craig spotted Sciambi across the field and knew that he wanted a picture with the broadcaster.

“We saw Boog from across the field, and you can’t miss his red hair, and I have red hair,” says Kristen. “So, I’m screaming at him and he comes over and we just start chatting … he pulls me aside as he was calling people over to meet Craig, because it’s Boog and he knows everybody, and he says if you guys ever need anything … and that’s how our connection solidified almost five years ago.”

“Boog’s spirit with Craig is just phenomenal. He’s just genuinely a kind, beautiful person who expects nothing in return except you pass it on to somebody else.”

Through the connection with Boog, Craig and Kristen were introduced to Project Main St., which has provided financial assistance for them, but more importantly has become family.

“They have helped myself and so many others and I could never thank them enough. The people behind Project Main Street are not just people who help people with ALS, they have become family,” says Craig.

For Craig and Kristen, having Major League Baseball formally recognize the fight against ALS with the introduction of the inaugural Lou Gehrig Day is a long overdue step towards spreading awareness throughout the country.

“It’s one of those diseases that’s not marketable … maybe not enough people have it to make it a big enough deal. But the people that have it are completely devastated and leveled by it,” says Kristen. “Coming onto the Major League spectrum where it’s going to hit millions of households is just awesome. We’re really excited that so many people will have awareness … from inner cities to farm country. We’re really fortunate to be a part of the first one.”

“Currently there is no cure for ALS but with yours and everyone’s help,” says Craig. “Hopefully soon we can find a cure.”

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