Alpha Gal Sucks

The hat

In an effort to make AGS not-so-scary, Madeline and I made some crafts together. Somehow, she landed on wanting to make a hat about AGS. She aptly came up with “Alpha-Gal Sucks.” I smiled at the funny, playful, relatable design she’d drawn. Then, she had to call 911 and ride in the ambulance with me. She wore the hat to the ER, and the staff noticed it and thought it was great. When my friend who also has AGS came with Madeline and I on an outing, Madeline wore the hat, sparking many conversations and allowing us to raise awareness about AGS. Very few people had even heard of AGS.

Madeline’s hat had already raised awareness and sparked conversations, but I realized it could do more. On the way home, Madeline and I brainstormed some ideas for slogans, t-shirts, hats, etc. The next day, Madeline’s friend came over to play and they decided it would be a fun idea to make things like bracelets and keychains to sell in our neighborhood as a start to our nonprofit. Within an hour, they raised around $100 in purchases and donations. Madeline’s “Alpha-Gal Sucks” hat started our journey of raising awareness about Alpha-gal Syndrome in an approachable way that has grown to our development of this website as a resource and merchandise sales which profit research into AGS.

Order Now

This is our

organization

The most shocking part about my experience was how few people knew what AGS is or how to treat it. It was eye-opening that I had to educate the EMTs, doctors, and nurses in the ER. They’d never even heard of AGS. I started looking for resources, but found almost no information. I discovered alphagalinformation.org which was helpful, but mostly clinical, and I still had a ton of questions. I stumbled through the entire process trying to develop an emergency plan that I could hand off to a stranger if needed. It was terrifying, depressing, and isolating. I made my emergency bag as noticeable and visually guiding as possible. I spent the week going over the plan with Madeline, even getting her an emergency cell phone, and putting my back-up EpiPens in the kitchen where she could access them quickly if needed. We rehearsed our 911 script. But throughout the process, I wished I had a layman’s resource to help arm me with practical resources to deal with my AGS.