October 2017 Volunteers of the Month
Craig and Kristen Colby

 

Volunteers are crucial to the success of any non-profit. For the past 40 years, The ALS Association Greater Philadelphia Chapter has been advancing the mission for ALS families with the help of committed volunteers throughout Pennsylvania, New Jersey, and Delaware.

While every volunteer is valuable to the ALS mission, some go the extra mile. Craig and Kristen Colby go the extra mile and more.

This year marks a special milestone for the Colbys. In 2008, after months of tests and visits with specialists, Craig learned that he had ALS. His wife Kristen had a feeling that his symptoms would lead to that diagnosis. She had just read tuesdays with Morrie and many symptoms that Craig was experiencing helped her come to the same conclusion.

So when the doctor told them the news, they had to make important decisions about what to do next.

“We decided right away that we weren’t going to let ALS take us down,” remembered Kristen. “We just had too many plans.”

This year, Craig and Kristen have very important plans that include taking part in their 10th annual Greater Philadelphia Walk to Defeat ALS® with team Colby’s Crew. It has been ten long, challenging years with ALS, but, with every challenge, the Colbys have fought back with love, compassion, and a determination that nothing will stop them.

In fact, nothing could stop Craig and Kristen from getting together in the first place. Their marriage is born from a mutual desire to not let anything keep them apart, not even an ocean. In 1992, Craig Colby played the role of Charlie Brown at his all boys' high school. A young woman named Kristen Halaszi from a neighboring school played the role of the Little Red Haired Girl.

Just like in the comics, Charlie Brown and the Little Red Haired Girl did not become a couple. They went on to lead separate lives with their own twists and turns. A series of events sent Craig to work in Hawaii. After some time there, he began to feel some “island fever” and missed the mainland.

One day, Craig watched a video of his Charlie Brown musical with a friend and wondered whatever happened to the "Red Haired Girl" whom he met so long ago. So Craig went online to find her.

This was in 2002, before Facebook or Twitter made it easy to find people online. But, just as ALS won’t stop Craig today, nothing would stop him from finding his "Red-Haired Girl." He searched and they started to communicate online. She was in Delaware and soon Craig would be too.

Getting back in touch with Craig was a spark that lifted Kristen up just when she needed it most. “I had gone through a bad break up, 9/11 changed everything at work, and my grandmother had just passed away,” said Kristen. “Craig saved me. He made my life whole.”

Kristen and Craig married in 2004. Charlie Brown got the ending in real life that he didn’t get in the comic. Of course, it wasn’t an ending. Their story was just beginning, and it would take a big turn a few years later.

Just four years after their wedding, everything would turn around in ways they never had expected. They had gone through so much just to get back together and they refused to let ALS ruin those plans.

The first thing they did was sign up for the Greater Philadelphia Walk to Defeat ALS. That year, their team raised over $9,000. They saw what was possible if they just fought with that same tenacity and love that brought them together.

The walk was a rallying point for Craig and Kristen, but, as time went on, they wanted to do more. They helped with the success of Hot Chocolate, worked at tables raising ALS awareness as Community Ambassadors, and shared their story in the media every chance they could.

Millions of people did the ALS Ice Bucket Challenge in 2014. Kristen did the challenge over and over again. She became a local spokesperson through the social media phenomenon, accepting challenge after challenge to raise more money and awareness. While Craig’s ALS continued to progress, so did Kristen’s motivation. It seemed like every year, there was something new to energize Colby’s Crew.

2017 marks the 10th year in a row for Colby’s Crew at the Walk to Defeat ALS. They are working hard to make this year extra special with creative shirts and more outreach to remind their friends how important this cause is to them and to thousands of others battling ALS.

Craig and Kristen have also been some of the most visible faces in another part of the ALS mission – Advocacy.

Each year, Craig and Kristen tell their story to the members of Congress from Delaware. Craig uses a computer to speak and has taken the time to type out compelling stories with eye gaze technology. The staff at the offices of Senators Carper and Coons recognize Craig right away now. In fact, the Chief of Staff for Senator Chris Coons always makes a point to be in the meetings with the Colbys.

Craig and Kristen Colby are the only advocates to have met with their state’s entire Congressional Delegation. Sure, Delaware is small compared to Pennsylvania and New Jersey, but that shouldn’t take anything away from the fact that the Colbys have personally met with Senator Carper, Senator Coons, and Congresswoman Lisa Blunt Rochester. That was just this year alone!

The Colbys have also told their story to Governors Jack Markell and John Carney. Their advocacy has lasted longer than a Governor’s term of office. Every year, whether in Washington, DC or Dover, Delaware, these advocates go where they need to go to make their story known.

The fact that the Colbys do so much is enough to make them Volunteers of the Month, but there is something just as important that makes them stand out as Chapter volunteers. They are exceptionally good at what they do.

When the Ice Bucket Challenged took over the world, Kristen Colby put in more hours in ALS promotion than most anyone could imagine.

When registration for the Walk to Defeat ALS goes live, the Colbys are among the first to sign up and get their team organized. Every year, they are one of the most active teams in fundraising.

And when they meet with members of Congress, those lawmakers listen. US Senators sign on as cosponsors, state legislators make funding a priority, Governors raise awareness.

People notice when Craig and Kristen make noise for the ALS cause. They have been making their story known for ten years running and, just as nothing, not even an ocean, could keep them from getting together, nothing will keep them from fighting ALS for others. The Greater Philadelphia Chapter and the ALS community are stronger because of the time and energy of people like Craig and Kristen Colby.


 
 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.