When Amy Reinmuller first considered hosting One Small Step Baton Rouge, the idea stayed in the “maybe someday” category for a long time. Fear kept getting in the way.
“What if nobody comes?” she remembered thinking. “What if I can’t pull it off?”
Like many parents navigating a new Prader-Willi syndrome diagnosis, Amy was already carrying enough. Hosting a fundraiser felt meaningful but overwhelming.
Then she connected with Brittany Williamson.
“She said, ‘Let’s do it,’” Amy shared. “And it really lit a fire under me. I just needed someone else to believe we could do it, too.”
That simple conversation became the beginning of One Small Step Baton Rouge, a first-year event that brought local families together, raised awareness for PWS, and generated more than $15,000 for PWS research.
From Fear to First Steps
For Brittany, fundraising quickly became part of how she processed her son Branson’s diagnosis.
“The moment I found out about my baby’s diagnosis, I knew I had to do anything and everything in my power to help his future, as well as other PWS families’ futures,” she said.
Her motivation was immediate.
“One of Branson’s aunts told me, ‘I am so proud of you. The second you found out about his diagnosis, you put your feet on the ground and started running and haven’t stopped.’ That pretty much sums it up.”
Amy connected deeply with that feeling.
“As Lilly’s mom, there’s always a part of me that feels like if I keep pushing, advocating, fundraising, educating… somehow it all adds up to more hope for her future,” she said.
Both moms spoke about research not as an abstract idea, but as something deeply connected to daily life and long-term hope.
“Research gives me hope for Lilly’s future and for this entire generation of kids growing up with PWS,” Amy shared. “Because of the generations before Lilly, we have more awareness, more understanding, better care, and now treatments that families years ago couldn’t have imagined.”
A Grassroots Effort Led by Community 
As planning began, the Baton Rouge community quickly stepped in.
Brittany leaned into local sponsorship outreach and grassroots fundraising efforts, including a fundraiser called “Cracklin for Branson” hosted through Fred’s on the River, where she had only recently started working.
“Considering I had just started working there two months prior to asking them for sponsorship and help with raising funds, the feeling was so wholesome,” Brittany shared. “There was no hesitation. It was automatically a yes.”
Another local supporter, Mr. Robert Graves, offered to make cracklin — a popular Louisiana Cajun snack — and told Brittany not to worry about anything except selling it.
The support surprised both moms.
“We started this hoping to raise a couple thousand,” Brittany said. “We did not think $15,000 was possible our first go around.”
Amy saw something else forming too: connection.
“I knew there were families in the area,” she shared, “but I never really knew where they were or how to find them. Somehow this little walk brought all of us together.”
That sense of community mattered just as much as fundraising totals.
“There was something really emotional and comforting about looking around and realizing we aren’t as alone in this PWS life as it can sometimes feel,” Amy said.
Rain, Resilience, and Showing Up Anyway
Of course, the event did not unfold exactly as planned.
Heavy rain and severe weather leading up to the walk created real challenges for many attendees, especially families traveling from harder-hit areas.
“As much as I kept refreshing the weather radar, nothing was changing!” Amy shared.
But somewhere in the middle of the stress, she realized the uncertainty felt familiar.
“The weather felt oddly similar to living with PWS and even getting Lilly’s diagnosis in the first place. It wasn’t what we planned. It wasn’t what we had hoped for. But it was also completely out of our control,” she shared. “So we adapted and kept moving forward one step at a time. I think living with PWS teaches you that lesson pretty quickly. You can spend all your energy wishing things looked differently, or you can keep showing up anyway.”
The rain changed the day, but it didn’t stop it.
“It was inconvenient, wet, messy, and definitely not ideal,” Amy said. “But people came anyway. They showed up to support Lilly, PWS, and our family, and that meant more to me than I can explain.”
For Brittany, the experience reinforced just how powerful community support can be.
“When people learned about the mission and why it mattered to us, they were eager to help,” she said. “It reminded me that even small contributions can make a big difference when a community comes together.”
“You Just Have to Start”
Looking back now, both moms hope other families see that meaningful impact does not require perfection, experience, or having everything figured out.
“I spent a long time talking myself out of hosting because I thought it needed to be huge or perfect to matter,” Amy said. “I’ve realized that’s just not true.”
Brittany agrees.
“There’s no such thing as ‘I can’t’ when it comes to fighting for your child’s future,” she said. “It may feel overwhelming at first, but you are capable of more than you realize.”
And perhaps the most powerful lesson from One Small Step Baton Rouge is this:
“You don’t have to be perfect,” Brittany said. “You just have to start.”
Are you ready to take action?
Inspired by Amy and Brittany? Find a One Small Step event near you, start your own, or make a donation today to help us take the next step toward new breakthroughs for PWS.
