How 10 FPWR Families Turned Hope Into Action and How You Can Too

Thinking about fundraising for PWS research but not sure where to start? You’re in good company!

These 10 parents all started in the same place—unsure, maybe even a little intimidated. But they took the leap. Not because it was easy, but because they wanted to create change for their children.

Some hosted a walk or an event. Others kept it simple with a virtual page. What do they have in common? They showed up—and made a difference.

Their advice? Keep it simple. Lean on your community. And just start.

1. Make It Yours

Nikol Maher, Hoops to End Hunger March Madness Bracket Challenge

“Our family has always loved sports, so we decided to host a fundraiser around March Madness. Since most people we know already fill out brackets, we thought it would be a perfect way to raise money for FPWR.”

Your fundraiser can be just as personal. Tap into your hobbies, interests, or what your network might like—sports, art, games, music. Start there, and watch your impact grow.

Brian Carucci, Virtual Fundraiser 

“Every year we worry—are we burdening our family and friends? Will they donate again? And every year, we are surprised by the generosity of not only our family, friends, and colleagues, but also complete strangers.”

You don’t need a huge network to make an impact. Every donation counts—whether it’s five dollars or five hundred. Share your story, and you might be surprised by who steps up to support you.

Dominique Deleage, One Small Step DC

“I focus on getting together, and those who are up for it create their own fundraising page. We’re really a community event.”

Oftentimes, keeping it simple is the best way to build connection and support.

Brian Kalasek, Live Life Full Omaha 

“Working with Jackie at FPWR made the entire process so simple—it really was turnkey. She handled the venue, marketing, emails, thank-yous… everything I needed to have a successful event.”

If you’re thinking about hosting an event, know this: FPWR has your back. You bring the heart, and we’ll help with the heavy lifting.

Jennifer Lloyd, One Small Step New Jersey

“I learned to take a step back and start small. When it comes to sponsors, think of close friends or family who may have their own business or work for a company, or places you visit often: restaurants, stores, salons. You’ll get one of three answers: no answer, yes, or no! The FPWR team is amazing in giving you all of the letters, ideas, and support!”

You don’t need big-name sponsors to make a difference—you don’t need a sponsor at all, really! But if you’re curious, it never hurts to ask. A few small contributions from local businesses or people you know can go a long way.

Leslie Born, Nathan's Army, SYS 

“The most rewarding part is seeing how many people love and support Nathan. It’s amazing to see the community come together and believe in our cause. Fundraising isn’t my strong suit, but Nathan inspires me to fight for something bigger than myself.”

You don’t need experience to fundraise—you just need a reason. The love behind your “why” will do the rest.

Renee Snyder, Pars for Peyton Golf Tournament 

“My husband says, ‘Your comfort zone is a dangerous place to live.’ Every step of this fundraising journey has pushed me outside of mine. But I keep my eye on the prize: the chance to give my daughter the ability to live to her full potential.”

You don’t have to feel ready to start—you just have to get motivated. That’s more than enough.

Michael Matesvac, One Small Kick, Georgia 

“We tried all kinds of fundraisers: selling coupons at Macy’s, gift-wrapping… but when we learned about One Small Step, we realized we could do our own version. I thought, ‘Kickball is a blast,’ then I saw it done at another event, and it was just what I needed to see what was possible.

The biggest hurdles are getting started and getting over the fear that it has to be a big thing."

There’s no one right way to fundraise. It doesn’t have to be grand, and it’s okay to try a few things before you find the right fit.

Kathryn McGhee, HopeFULL Dallas 

“Nearly 100% of PWS research is funded by parent fundraisers. These efforts have led to important discoveries—and today, there are eight clinical trials enrolling that address PWS symptoms. We are a rare community, and we have to take action if we want treatments. That is why I have been fundraising for research for the last 22 years!”

Fundraising can feel like a big ask—but it’s also the reason we have real hope. You’re part of something powerful.

Teresa Walker, One Small Step Avon, IN

“They say you can’t pour from an empty cup—hosting a walk fills mine. It lights my fire and keeps me focused on our goal. Fundraising gives me a small sliver of control in the uncontrollable world of PWS. When we finish our walk every year, we have the biggest sense of accomplishment. We fight for them and with them and it feels so good to be part of the solution!”

There’s something deeply rewarding about doing something for your child and with your community. Every step forward matters!

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Start Small. Dream Big. Do It Your Way.

Fundraising can look like anything—a walk, an afternoon at your local brewery, or a post with a donation page. Whether it’s a big event or a quiet ask, it all makes a difference. What matters most? That you start.

Ready to take the first step? Launch your fundraiser now >>

And if you need help, the team at FPWR is here for you!