From Diagnosis to Dream: Gold Award Project Celebrates a Decade of Impact on Youth Living with Celiac Disease

In 2014, Girl Scout alum and lifetime member Sabrina DeVos became the first in her hometown of Marion, N.Y., to earn the prestigious Girl Scout Gold Award.

As a 16-year-old youth member of the Girl Scouts of NYPENN Pathways council, Sabrina’s Take Action project, Celiac Strong Camp, created a place where kids could have worry-free days and fun in a safe, gluten-free environment.

Today, Sabrina resides in Liverpool with her boyfriend and pets. She continues to pursue her dream of making a difference for youth afflicted by the same autoimmune disorder she’s managed for two decades.

A Life-Changing Diagnosis
At six years old, when she was just a Daisy Girl Scout in kindergarten, Sabrina was diagnosed with Celiac disease. This chronic digestive and immune disorder is triggered by eating gluten. It causes damage to the small intestine and prevents the body from absorbing nutrients from food.

After her diagnosis, Sabrina had to make lifestyle changes and begin a gluten-free diet. This change was not easy. Sabrina’s mother began the laborious task of making gluten-free food, like bread, at home. At the time, Gluten-free options were not as common as they are today.

Turning a Diagnosis into Action
In 2006 at the age of nine, Sabrina attended Celiac Camp in Rhode Island. There, she experienced summer camp for the first time while meeting kids facing the same diagnosis who eventually became her lifelong friends. She continued to attend until 2014 when she aged out of the camp in her mid-teens.

After her time at Celiac Camp, Sabrina dreamed of creating a similar program for kids with celiac disease living in her local community and throughout Upstate New York. She wanted them to come together and have fun at summer camp without worrying about their diagnosis—just like she had.

When Sabrina began planning her Girl Scout Gold Award Take Action project, she knew what problem she wanted to tackle and how she could address it with an enduring initiative.

The Girl Scout Gold Award is the highest award that Seniors (grades 9-10) and Ambassadors (grades 11-12) in our Movement can earn. Gold Award recipients are rock stars, role models and real-life heroes who develop a Take Action project to solve a problem in their community or the world. Most notably, their plan must be sustainable and leave a lasting impact.

In 2014, Sabrina founded Celiac Strong Camp. It was originally held at our Camp Comstock property in Ithaca. With her Take Action project, determination and support from her mom (who was also her troop leader), Sabrina earned her Gold Award and created a program that is still going strong today.

Celiac Strong Now
In 2016, Celiac Strong Camp became an official 501(c)(3) nonprofit organization. In 2017, it relocated to Western New York and continues to be run at Camp Cherith in Hunt.

Each year, more than 70 youth campers enjoy icebreakers, crafts, archery and other traditional camp activities. Nothing at Celiac Strong Camp contains gluten, including soaps, clays or any other materials that campers may be working with or using. Many campers who age out return as staff members.

This summer, Celiac Strong Camp celebrated 10 years of making an impact and creating a fun, safe space for youth living with celiac disease. Sabrina says the most fulfilling part of camp is seeing the friendships that develop. “There is just a lot of love between the campers and staff…it feels like a family.”

Inspiring Others
Sabrina’s success with her Gold Award Take Action project is inspiring to Girl Scouts who hope to create a lasting impact on the world. She took her diagnosis of an autoimmune disease at the age of six, which at the time was not as common or well-known as it is today and turned it into a positive impact on her community.

Sabrina’s Gold Award journey is a reminder to everyone to turn their passion, challenge or dream into something that inspires and impacts others. To learn more about Celiac Strong Camp, visit celiacstrongcamp.org.