Two years ago, Dani Trainor was navigating life with premature twins, a prolonged NICU stay, and a Prader-Willi syndrome diagnosis for her son, Tommy.
Two years later, she stood in a Raleigh, NC park surrounded by families she'd helped bring together, celebrating $35,000 raised for PWS research.
When Dani first considered hosting a One Small Step walk, she nearly talked herself out of it.
"I think there were probably at least 10 back and forth emails before we really got this thing off the ground," she laughed.
Eventually, she picked a park, set a date, and decided to go for it.
"There was no turning back at that point. We were doing this!"
Sometimes, All You Have to Do Is Ask
Once the walk was officially on the calendar, Dani got to work, reaching out to local businesses, including some she wasn't sure would be interested.
One was Lawn Doctor, a company her family had used for years.
"I was like, 'No way they'll sponsor,' but they immediately said 'Awesome, here's $500.' And I was like, 'What!?'"
That unexpected yes gave her confidence to keep asking.
Dani sent sponsor request emails, shared her family’s experience with PWS on social media, and invited families to come out. Eight other families joined in as fundraisers!
When the day arrived, people were already pitching in before Dani even got to the park.
Fellow PWS parent and One Small Step host Mike drove from out of state to be there, arriving early to help hang banners.
"Mike truly helped so much," Dani recalled. "Donna was a huge support, too, willing to do anything and everything. It was just awesome!"
What started as one family's idea had become something the whole community was helping bring to life.
More Than a Walk
Dani expected a weekend focused on PWS awareness. What she didn't expect was a family reunion.
Her sister traveled from Michigan with her family. Her brother-in-law and sister-in-law flew in from Houston with their children. For the first time in years, both sides of the family were together.
"It just turned out to be this really incredible family reunion at the same time," Dani shared. "It was amazing and very unexpected."
Beyond her own family, she discovered a PWS community much bigger than she'd realized.
Families traveled from Charlotte and surrounding areas. Parents connected in person, sometimes for the first time. People found others who understood the PWS journey.
"We realized that there is a community here," Dani said.
That realization carried special meaning for Dani and her husband, Kyle.
When Tommy and Lainey were younger, the couple considered attending a PWS gathering themselves but ultimately decided they weren't ready. "…and that's okay," Dani said. "Everyone takes their own time."
Now, just a couple of years later, they were the ones creating that opportunity for others.
Reflecting on the experience, Dani became emotional.
"Wow, the shell of a human I was two years ago to where I am now," she said. "Looking back at this, I think that is what I'm most proud of."
Inspired to Take Action
She'd watched other PWS families organize fundraisers, including Jen and Jake Lieberman, whose first One Small Step walk in Maryland raised more than $70,000 earlier this year.
Seeing what other families were doing made her wonder what she could do, too.
"It was just the fact of seeing other people do it and seeing the difference that everyone has made," she explained.
For Dani and Kyle, supporting PWS research means everything. Since Tommy's diagnosis, they've followed scientific advances and clinical trials, hopeful about what new treatments could mean for their son. Hosting a walk offered a way to help move that research forward.
"I'm not a scientist. I can't do anything like that, but I can help fund the research, and I know any dollar amount we raised would make a difference," Dani said.
When asked what raising $35,000 for PWS research means to her, Dani connected it to something bigger than a dollar amount.
"I think what it means, truly, is just hope," she said. "We have the power to make a difference, and that just brings me so much hope. Not just for Tommy, but for everyone with PWS, too."
Two years ago, Dani was finding her footing after a life-changing diagnosis.
Today, she's helping other families find theirs.
It Starts with One Small Step
You don't need fundraising experience or a big team to host a fundraiser. FPWR provides tools, resources, and one-on-one support to help you get started.
It Starts with One Small Step →
