Rebecca Tillou is on the move again. A runner since middle school, an FASD self-advocate starting with her diagnosis at age 34, and the founder of Move FASD, Rebecca is not slowing down. What started as “Run FASD” in 2021 as a community fundraiser has grown this year into Move FASD, a national series of local events to gather our communities for FASD Awareness Month, taking place this September. Whether it’s a run, a walk, a swim, even a dance, everyone is invited to join the movement.
“Move FASD is an incredible term because it’s not just moving your body. It’s moving the FASD community forward,” Rebecca says. “It’s moving us into all sorts of different environments, to have everyone recognize FASD. With Move FASD, you can do karate, kick boxing, walking, bicycling, anything!”
Rebecca has always considered herself a bit “quirky.” Long before her diagnosis later in life, she felt like her brain just worked differently. “I’m a very sensory person,” Rebecca says, “and moving my body, running in particular for me, grounds me like nothing else. I can feel my feet on the pavement. I hear the sounds. I sense the people around me.” Rebecca has been off and running since she started tagging along with her dad on 2-mile loops. She joined running groups in middle school and has been going ever since. “I love running, it makes you feel good afterwards when the endorphins kick in,” Rebecca says. “It all connects in your body, physically and emotionally. I feel calmer after that runner’s high, I’m in a better mood, you can ask my husband, it just grounds me.”
While Rebecca loves to run herself, she is sensitive to the ways that calling the event a “run” may have felt a bit intimidating to some folks. She is excited about this year’s pivot to “Move FASD” as a way to be more welcoming to everyone in the community. “This year, I’m hoping people won’t “run” up against a wall in terms of it being a run. I hope people will see the word “move” and are intrigued by it and know that it’s about any type of movement. It’s about building community and spreading our wings. I’m excited by all the possibilities.”
Rebecca has felt called to support others in the FASD community shortly after her own diagnosis. She remembers getting diagnosed at age 34. Though she was an adult, she was diagnosed by a genetic pediatrician. Rebecca sought out the diagnosis after years of struggles with things like math and in reading social cues. “With the diagnosis, things just fell into place. I’ve been a self-advocate ever since, for parents and guardians with FASD.”
“When I got the diagnosis, I felt happy. I was glad I had an answer, a reason,” Rebecca says. “My mom heard the news and initially felt like she could have done something differently, something more for me, but that’s not the case. My parents raised me in such a way that I was successful, in a very loving and structured environment that was good for my brain, that protected me. My mom has always been in my corner, especially now.”
Rebecca has a saying she likes: “Every step forward leaves a footprint for others to follow.” Following her diagnosis, taking the journey into becoming a self-advocate felt like the natural next step. “I wanted to share my story and the first interview I ever gave was with FASD United. I saw the feedback to it and I was blown away. I realized there are many other people like me, and parents with children, that have questions. If I can give my experience, I can give people some hope, and that’s why I do it.”
To Rebecca, meeting others with FASD is like finding her tribe. “You just get each other, you have this commonality. My brain is quirky, it’s different, but when I get together with folks with FASD, we all get each other, and it’s an incredible feeling, that community and bonding.”
A few years back, Rebecca appeared on an FASD podcast and was asked where she saw herself in 5 years. Without hesitation, she replied that she wanted to give back to the community and make a fundraiser. Knowing that running was near and dear to her heart, Rebecca’s mom suggested the idea of a virtual 5K run to raise awareness for FASD. “As soon as I heard that, I knew it was perfect! I got FASD United involved, reached out to Jenn Wisdahl for support, and we made it happen really quick. It was during the pandemic and virtual racing had become a big thing.” It was actually Rebecca’s husband who coined the term Run FASD, which started in 2021 and has been an incredible success, one that Rebecca is very excited to see morph into Move FASD this year.
“I got my 13-year-old son involved, he was 10 at the time, he was my sidekick. We did a video each time before a state would start their virtual or in-person event, so we would say “Minnesota, start now!” Rebecca hosted an in-person event in her small town of Voorheesville in upstate New York near Albany. “We had about 10 people, family and friends, we would run and talk about our families. It was great”
Rebecca is still blown away by how much the event has grown. For the past three years, she has joined the event in Rochester, New York. Last year, they broke their record and had over 100 people involved, which Rebecca calls “amazing.” Dr. Christie Petrenko, a leading FASD expert at the University of Rochester, has taken the event by storm. Rebecca herself has been featured on TV news several times as part of her town’s run, which is now up to about 25 people. “It is really growing.”
“I’m so excited for Move FASD this year,” Rebecca says. The affiliates of FASD United are getting on board even more this year. Move FASD is about bringing awareness of FASD throughout the U.S. You can move any way you’d like. It can be jump rope, it can be bicycling, taekwondo, swimming. You can be as imaginative as you want, it could be a dance party, walking your dog, cooking, anything that involves movement. We want to use people’s strengths. Everyone has strengths, it’s just asking, “What is that fun movement to each person?”
One moment from a past event stands out and still hits Rebecca every time she thinks about it. “A woman in her 20s came up to me at one of the runs and told me that she has an FASD, that she was just diagnosed. Then her mom came up to me and said “Hi, I’m her birth mom” and she started crying and said “I just never knew. I never knew the dangers of alcohol, I didn’t know I was pregnant.”
“So now I’m crying, she’s crying, she’s telling me that I’m such an inspiration.” Rebecca still keeps in touch with that young woman, the daughter, who is now part of the Special Olympics. “That was a real defining moment for me,” Rebecca says. “People are always learning and growing. It’s OK to say that I have FASD. For that mom to tell me that she drank, it tells me that she’s working through that. It was awesome to meet a family like that.”
Rebecca wants everyone to know that they can go to the Move FASD website and get more information from FASD United. “The website walks you through the process. You can join a team, you can make a team, you can reach out with questions to me or to Emma Baldwin, the Move FASD events coordinator. You can plan your own event. There are virtual options. Please join us!”
Move FASD is important to Rebecca because “it’s a different avenue to bring awareness to FASD. Everyone can do something different, whatever movement means to them, and people are coming together. When community is brought together, it brings comradery, it brings excitement, it brings communication, and along with that comes education.”
The excitement of an event like Move FASD keeps building even after the event is over. “There is so much action during Move FASD,” Rebecca says. “It’s not like some other events where you may sit and listen. Everyone is involved and active. Little seeds of action get planted in everyone. And it continues to make a difference. We as a community are constantly moving forward. I am so excited for Move FASD this year. Join the movement!”