My 20-Year Journey with the NYC Celiac Disease Meetup

Twenty years ago, I began leading the New York City Celiac Disease Meetup group, driven by a desire to connect and empower the gluten-free community. It’s been an incredible journey filled with shared experiences, support, and celiac advocacy. Today, with a mix of emotions, I announce the time has come for me to step down from this group as a founder, long-time leader, and event co-organizer.

I joined Meetup.com when the website was brand new in 2002. From what I remember, Meetup was started to bring people back together after the 2001 terrorist attacks in NYC. I was working in Manhattan and living on Long Island at the time. I wanted to connect with other early 20-somethings who wanted to hang out after work. I felt lucky to have found this group so early on.

The very first Celiac Meetup I attended was probably around 2003. Meetup.com arranged the very first get-together at a bakery… a gluten FILLED bakery. There were about 5 women and we kind of all just sat there staring at each other and laughing at the ridiculousness of the situation. We couldn’t eat a damn thing.

I continued going to every event I could and soon became friends with the new organizer, Shanel. We soon started co-organizing social events across New York City. We hosted dinners, happy hours, lectures, and more. We both wanted a gluten-free group to hang with and relate to on a more personal, Celiac level. It worked.

When I started solo organizing events in 2004, I had no idea what a big impact this NYC Celiac Meetup Group would have on my life. In a pre-social media world, the meetup group was a lifeline to the celiac disease and gluten free community. This group allowed me to build an enormous network of gluten-free people living with celiac disease in New York City and beyond. 

I take immense pride in how the group evolved over the years. In my leadership role, I hosted hundreds of events and membership grew to over 2,000 members. I made lifelong friends in this group and for that I am forever grateful. I met some of the top celiac research doctors in the world. I raised hundreds of dollars for celiac disease associations through fundraisers and the annual Paul Taylor Dance Company event. The list goes on and on. I continue to be proud to how I grew and shaped the group to what it is today.

Upon reaching the 20 year milestone with the NYC Celiac Meetup group, I did a lot of deep thinking about my role with the group and how it evolved over time. I’ve kept a low profile over the past few years simply because personal circumstances sucked up my time. (Hello motherhood!)

When I started with the group, there was no such thing as social media. Smartphones were just hitting the streets. Community building was slowly starting online but still strongly in-person.

Today, there are more social media platforms than I can even count. I have created two successful websites, grown an international audience, and have connected with thousands of people. I have built a community I am forever in awe of and thankful for. Teenage Erin knew only 5 people or less with celiac disease. Today I know hundreds!

But things change, people change, and priorities change. As I get older, I realize that time is so precious and I really want to focus on things that matter to me the most. The NYC Celiac Meetup group will always hold a very special place in my heart but it is no longer the group of yesteryear.

As Roy Disney says, “When your values are clear to you, making decisions becomes easier.”

I have decided to say goodbye.

While my time with this group personally comes to an end, my celiac advocacy journey and community building will live on through my website, speaking engagements and other live events. Plus, I am HERE and on social media. I cannot leave this gluten-free world for good. Life is just shifting.

Thank you to Meetup.com for really changing the course of my celiac disease journey.