Most college students wouldn’t think to spend their summer vacation riding their bike across the country — through intense heat and rugged terrain — and conducting research along the way. Emmaus Holder, however, is not like most students.

Beginning in North Carolina and ending in Los Angeles, Holder’s 4,000-mile-trip has one purpose: to raise awareness for fetal alcohol spectrum disorder.

The disorder is a result of brain damage that can develop if a mother consumes alcohol during pregnancy. Since it is a spectrum, FASD develops differently for every person, and symptoms do not necessarily manifest physically.

Marilyn Fausset, a local advocate for FASD, emphasizes the “unseen” nature of the disorder. She says that despite serving as a special education teacher for multiple years, she rarely heard anyone discuss it.

“(FASD) is the leading cause of developmental disabilities, and yet people don’t know about it,” Fausset said. “The main thing we need to do is make people aware of it.”

Holder is a sophomore and sociology major at the University of North Carolina at Chapel Hill. The 19-year-old pitched his cross-country ride as a research opportunity and was granted a scholarship from his school. Over the course of his trip, Holder is asking people questions about their own experiences with FASD and how they think institutions can improve.

“Just starting the conversation is the first step in poking the beast that is a failing medical system and, really, a mental health crisis,” Holder said .

Bringing greater awareness to FASD is a cause close to Holder’s heart. His family adopted a pair of brothers four years ago, both of whom are affected by the disorder. Holder says that having family members with FASD significantly opened his eyes to the struggles that come with it.

“A lot of the challenges they have stem from impulse control, aggression and inability to control extreme emotions,” explained Holder.

Holder made it to Boulder on June 17 at the end of another long day of biking. Upon his arrival in the city, he met Fausset, who had agreed to accommodate him for the night and also serve as another source for his research.

Fausset is involved with multiple FASD advocacy and awareness groups, many of which are local to Colorado. Fausset became interested in Holder’s journey after a member of one of these groups told her that he would be passing through Boulder. Fausset saw this as an opportunity to connect with a fellow advocate.

“(Holder) is helping to spread awareness, so we have the same mission,” Fausset said.

Fausset’s experience with FASD shares a few similarities with Holder’s. She adopted two children from Russia who were each affected by the disorder, one experiencing some behavioral issues while the other struggled more academically.

While Holder’s foremost concern is raising awareness, he still tried to make his trip as scenic as possible. His route has taken him through East Coast beaches and Midwestern farmland, and his final few legs will take him past the Grand Canyon and through Joshua Tree National Park.

“I’ve wanted to do a bike trip for a really long time,” Holder said. “I thought about doing one across Europe, but COVID kind of shut that down for the summer. So I considered the option of doing one (in the U.S.) instead.”

One day of biking lasts about 12 hours, with breaks only for eating. Holder says he fights boredom with music playlists, audiobooks and phone calls.

Holder wants to publish his research in the future, which he hopes will prompt greater awareness of FASD within the medical community in particular. Fausset also says that she plans to stay in touch with Holder going forward.

“It’s great to see somebody younger who’s an active advocate,” she said.

Despite a few technical stumbling blocks, like when a shattered bike bolt left him briefly stranded in southern Illinois, Holder says the main takeaway from his ride has been the “outpouring of support” he has received. The one-person tent he carries with him hasn’t seen much use due to how many people have offered him places to stay.

“It’s a good reminder of how good people are in this country, and how kind and welcoming so many people can be,” Holder said.

More information

For more information about FASD and how to prevent it, visit nofas.org/.