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FARE Blog May 14, 2020

Turning Questions Into Actions: The Fight for Food Allergy Advocacy

Heather Gass, a food allergy patient and parent, shares her path to becoming an advocate and her push for sesame labeling.

Guest post by Heather Gass, @food_allergy_advocate

Heather Gass resized

I've had a food allergy since I was 4 years old, growing up at a time when peanut allergy was just starting to gain attention. Now I have a toddler with multiple life-threatening food allergies, including sesame. Recently, I worked with my state representative to introduce two bills to the New Hampshire House of Representatives: HB1682 and HB1102 for food allergy plans in schools and required training for restaurant staff. 

My food allergy advocacy journey began when my son was diagnosed with his first of five life-threatening food allergies at the young age of 6 months. After coming to terms with his diagnosis and learning how to manage his multiple food allergies, I started to ask a lot of questions, but received very few answers. 

What is causing this to happen to my son, myself, and 32 million other Americans? Why don’t we have more treatment options? What protections do we have when dining out, going to school or daycare, or traveling on airplanes? There were questions across all walks of our lives. 

My frustration pushed me to action. One of my son’s allergies is to sesame, and it’s been the hardest one to deal with because, to date, it is not part of the Food and Drug Administration’s labeling law. Sesame can be hidden under different names or under “natural flavors” or “spices.” This obviously creates a problematic and dangerous issue for those living with a sesame allergy, as reactions can be just as life-threatening as with other common food allergies. This is when I came across FARE’s advocacy work on the FASTER Act, and I knew I wanted to get involved to be a voice for my young son.

As part of its advocacy efforts, FARE provides resources such as letters that the food allergy community or any interested parties can use to help raise awareness at the local, state and national levels. I took FARE’s letter, customized it with our personal story, and sent it off to my congresswoman. A few weeks later, I got a message back that she would sign on as a co-sponsor. I was elated! Just one simple letter and I felt like I had made a difference. I was so thankful to have come across FARE’s advocacy campaign and been able to get involved. 

Advocacy is at the heart of what we can do as a community to make progress in our efforts to move the needle for this disease. Our efforts to pass legislation bring awareness to the fact that 32 million Americans suffer from food allergies, and that we have so few treatment options and very little research to find out why allergies are increasing in occurrence and severity. Second, food allergy advocacy brings about real change. For my family, having the FASTER Act passed into law would bring us so much relief in dealing with our sesame allergy because we’d be able to know what products are safe for us to eat. Third, advocacy educates lawmakers with the important facts and background they need to make decisions, and in turn, vote on legislation. 

With persistence and diligence, we’ll keep working to keep food allergies on their radar. With FARE’s help, we’ve made so much progress with the FASTER Act and other critical legislation, and it’s important that we keep pushing to make sure mandates are passed. By doing this, we’re letting people know that we won’t be forgotten, and we’ll keep fighting until we have more treatment options and a cure. And in the meantime, we’ll continue spreading our message to build empathy, to help others understand our struggles and help keep us safer.

I will continue to hope for and dream of the day when we won’t have to check every label, scrub every surface, carry epinephrine 24/7, or be on high alert wherever we go. Until that day comes, I’ll keep advocating and pushing forward. Because if you don’t speak up, how will you be heard? 

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