More than a few times over the years, I’ve contemplated a name change. Not for myself (thankfully I’ve never had name envy) but for the kids’ Celiac support group I co-lead. This thought crossed my mind again at our last Cel-Kids Maryland gathering as I waited outside to greet families. It was a beautiful Indian summer day in the water-front neighborhood of Fells Point in Baltimore. Sun glistened off the Harbor and music played from shop fronts down the historic, cobble-stoned streets. Parents and kids of all ages from the group strolled into 100% gluten free restaurant Points South Latin Kitchen for our brunch and ice cream party. I thought to myself: Cel-Families might be more fitting name.

It’s no accident whole families attend our meet-ups; they’re planned that way. We try to set up events that appeal to of a range of ages. Parents look forward to the support they receive as much as the kids enjoy the activities. Everyone attending knows group members understand their path because they walk it too.

We are Family

When a family member is diagnosed with Celiac Disease, everyone in a family is impacted.  There are the obvious ways: filling a pantry with gluten free food and only eating out at safe restaurants. Then there are many less obvious, less visible impacts: family vacation destinations based on the availability of safe food, time spent advocating and educating school and teachers, frustrations felt from the isolation of feeling different, physical pain and symptoms of being glutened, and sometimes difficult or challenging conversations when advocating is necessary.

As the parent of a child with Celiac, I intimately understand these experiences. My role as Cel-Kids leader has also given me a window into other families. I’ve seen the spectrum of this impact and how it’s expressed in different families. But one thing is the same: siblings, parents and spouses are all in it together.

Running for Research and Celiac Cure

Baltimore native Halle Gray is no different. She has observed the challenges her sister Kiley manages daily with Celiac Disease. She was especially struck when she visited Kiley this summer. “I witnessed firsthand the immense challenges that she and everyone affected by celiac disease face daily. Just one crumb of gluten will make my sister physically ill and sometimes lasts for days.” She decided to do what she could to make a difference.

On October 21st, 2017 Halle will lace up her sneakers and hit the streets of Baltimore for the Baltimore Running Festival. Running the half marathon – 13 miles – she will dedicate funds she raises for Celiac Disease research.

Beyond Celiac

Halle is donating funds to Beyond Celiac,  a not-for-profit dedicated to accelerating research to find new treatments and a cure. The organization’s mission statement particularly resonated with her: that we should live in a world in which people with celiac disease can live healthy lives, free from social stigma and fear of gluten exposure.

Beyond Celiac’s Research and News page highlights current Celiac Disease research as well as what’s on the horizon. They’ve also built a comprehensive online Celiac community: Go Beyond. This community was created for people with Celiac, by people with Celiac. Through shared experiences and stories, Beyond Celiac hopes to drive further research.

Halle knows these efforts may one day lead to different world for her sister and she is grateful for any donations. “Thank you in advance for helping me, my sister Kiley, and the 3 million people waiting for a cure.”

Please consider supporting Halle’s run in the name of all those we love with Celiac. And their families.

Read more about how to contribute to Halle’s run.