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FPWR Welcomes Natalie Brenneman to the Team!

FPWR extends a mighty welcome to our newest team member: Natalie Brenneman!

Natalie is a veteran to our community of dedicated movers and shakers and has been involved with our Foundation since the birth of her son in 2015. We are excited to bring her onboard so she can put her talents and experience to use supporting other fundraisers in their efforts to make an impact on PWS research. Natalie will be taking on the role of our Peer-to-Peer fundraising coach and will be supporting our One SMALL Step and Do-It-Yourself fundraiser hosts as they work to accelerate treatments for our loved ones with PWS. 

A Message From Your New Peer-to-Peer Fundraising Coach: Natalie Brenneman

WBB_1036Since my 5-year-old son, Evan, was diagnosed with PWS, I have been passionate about raising funds for research so that we may find treatments that allow him to live a FULL and independent life and I am thrilled to be joining FPWR’s team so that I may support others in their fundraising journeys!

Like most babies with PWS, Evan had a turbulent start with a long NICU stay, failure-to-thrive diagnosis, and endless therapy and medical appointments. I felt overwhelmed and alone, but my fragile, blue-eyed baby lit a fire within me. I promised him that I would do whatever it takes to help him flourish. 

When Evan was 9 months old, our family attended our first One Small Step walk. Meeting other PWS families inspired us to get to work, and we returned as co-hosts the following year. We are so proud to host our annual One Small Step Avon alongside the Peden and Walker families. The support we receive from our family and friends every year is incredible, and the connections we continue to make within the PWS community reminds us that we are not fighting alone. 

In addition to One Small Step, our family has hosted a variety of other events. My strength is in the grassroots, “small potatoes” fundraising arena. I’ve led t-shirt fundraisers, birthday parties, silent auctions, raffles, March Madness pools, a motorcycle ride, baby bets, charity garage sales, a wood painting workshop, tailgate parties, and several virtual fundraisers. Every dollar raised brings us closer to treatments that could truly change Evan’s life. That drives me to keep going.

I feel fortunate to be surrounded by a brilliant team of people working hard to expedite treatments for our kids. There’s so much love and energy in this community. The research is progressing rapidly. Treatments that will help our loved ones reach their full potential are well within reach. There is so much hope!

With that, I’m ready to support you. Whether you’re a fundraising pro or a nervous novice - I am eager to help! If you think “I can’t do this,” or “I don’t know where to start,” you aren’t alone. Fun fact - I’m shy and introverted, but my passion for this mission pushes me out of my comfort zone. I can coach you from start to finish, or simply bounce ideas around with you. I can plug you in to the resources you need and guide you every step of the way. The faster we fundraise, the faster research moves, the faster our loved ones get the treatments they need. If you love someone with PWS, I encourage you to get involved. Let’s do this!

Send me an email or call me at 317.612.4261.



Topics: News

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.