I’m running the TCS NYC Marathon with a purpose that means so much to me. I’m proud to be part of the National Organization for Rare Disorders (NORD) and their Running for Rare team.

But really, this is about Charlie.

Charlie is 9 years old and one of the most special people I know. I’ve been lucky enough to know him since the day he was born, which means I’ve had a front row seat to just how incredible he is.

He loves Ghostbusters, is a diehard Chicago Bears fan, and if he had the chance, he’d be out there throwing a football until his opponent finally gave in.

His biggest, brightest smile comes out when he hears the voices of his mom, dad, and his big brother James. And his dog, Sunny? Pure joy and comfort in a way only a best friend can bring.

Charlie was diagnosed with CLN1 Batten disease, an ultra-rare and devastating condition. It’s changed so much of his world, but it hasn’t changed who he is at his core. He still brings light to every room and reminds everyone around him what really matters.

Running for Rare brings together people who want to make a difference for the rare disease community, raising awareness and funding research for the more than 10,000 rare diseases impacting over 30 million Americans.

My goal is to raise over $6,000 to support research, advocacy, and care for families like Charlie’s. Every donation, share, and word of support makes a real impact.

Find Hope. Give Love. Be Good. #TeamCharlie

Let’s run for something bigger. Let’s run for rare. 🧡