How a Teacher's Selflessness May Help Find a Cure for Leukodystrophy

I’ll never forget that day in September 2014. I was at my daughter’s school anxiously spying on her through a little glass window into her kindergarten room. I wanted to see for my own eyes that everything was OK. It was her first week of “big girl school,” and she was sharing the hallways with kids twice her age and twice her size. My stomach was in knots.

Two years prior Ellie had been diagnosed with a rare and degenerative form of leukodystrophy known as LBSL. First discovered in 2007, there are thought to be less than 100 cases worldwide. The genetic condition causes deterioration of the brain’s white matter and primarily affects mobility and balance. The prognosis was grim: death could come calling as a young adult.

As I peaked in the little window on the door and saw her playing happily, I heard a voice behind me coming from down the hallway. “Are you Ellie’s mom?” said a guy walking toward me who I knew was the gym teacher but had never officially met.

“Hi there. I’m Joe,” he said. “I’d like to do a 5K race to raise money for your daughter’s cure.” He explained that he had recently moved into the neighborhood and was looking for ways to get the community more involved in the school and its students. Apparently, another teacher had sent him a link to Ellie’s website, “ACureforEllie.org” and he thought she was the perfect cause to rally around.

“Sure,” I said, “That would be awesome.” We traded information, and I just assumed I’d never hear from him again. A lot of people, myself definitely included, intend to do nice things but never find the time to follow through – especially with such an ambitious plan.

Three months later Joe, or “Mr. Reed” as the kids call him, contacted me. A race website was in the design phase and a planning committee had been set up that include members of the local citizen’s association. They were applying for permits to shut down the streets in our neighborhood, and he needed my help picking a logo and soliciting local companies for sponsorship.

“Wow,” I thought, “This really happening.” To say I was surprised was an understatement.

Over the next several months, Joe worked tirelessly in his free time after school to make sure every detail of the race was planned. I’ve never seen anyone give so selflessly. By the time race day came around I could tell he was exhausted. I felt guilty he was doing so much, but he assured me it was what he wanted to do.

That first race took place April 26, 2014. More than 600 people from our town showed up and we were on the local news. At the end of the day, Joe’s race, which we called the “Fairlington 5K” to honor the community in which we live, raised $11,000. Since then we have held two more races and raised an additional $38,000.

With this money in hand we approached a well-regarded doctor and expert on leukodystrophies about conducting research into LBSL in the hopes of finding a cure. Suddenly we went from being a desperate family with their hand out to being a bonafide fundraising machine with money in hand. The doctor put pen to paper and created a seven-year research plan with costs and milestones. The project launched last March and is going well. Thanks to Joe and his race, our foundation’s name is more than just a slogan – we really are working toward “A Cure for Ellie.”

I have never seen anyone do something so monumental and meaningful for a complete stranger. And to be the one at the receiving end of this generosity is quite humbling to say the least.

Joe has given our family the gift of hope, and there is nothing in the world I could ever give him of equal value. All I can do is tell the story of this beautiful gesture and hope it inspires others to do the same. Do something bold for someone else. You never know – you might just save a life.

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