Empowering Our Community: One SMALL Step Leads to BIG Leaps

While always impressed by the achievements of our community, I could never have imagined how our walks could grow our community, bring us all together and raise MILLIONS of dollars for Prader-Willi Research!! Since our first One SMALL Step walk, we have collectively raised over $3 million for PWS research. We have grown from 1 walk in 1 country to over 70 walks around the world! Walks have been held in Belgium, the UK, France, New Zealand, Canada, Ireland, the US, and most recently, Australia!

Monique Ulani brought One SMALL Step to Karratha, Australia, August 17th, 2013, by inviting her family and friends to participate in her local KCA community walk. This 3.5 KM hike along the Jaburara Heritage Trail was not for the faint at heart but 65 amazing supporters took the challenge raising nearly AU$10,000 for Prader-Willi Research. Little baby Maia even took part cradled in an infant carrier. Also on August 17th but on the other side of the world, Jennifer Bender held her second One SMALL Step event in Pittsburgh, PA. Boasting over 200 people in attendance, Jen estimates the walk will raise approximately $35,000!! Pregnant with her third child and recovering from a recent appendectomy, Jen relied on the graciousness of many community volunteers. “The 2nd year is much easier than the first because you have volunteers that know what to do to help and you know how you want everything to run,” Jen stated. “I will definitely host another walk and would love to get more families involved!” Megan O’Neail, mom to Chloe and One SMALL Step walk participant recently reflected on the challenges of fundraising for a medical foundation. “A breakthrough in cancer research coming out of Princess Margaret Hospital in Toronto, Canada has been in the news lately.

That breakthrough took a decade and $40 million, has only been tested on mice, and may apparently be a decade away from market. And that’s for a very common devastating disease that affects people around the globe. So when it comes to a rare genetic disorder like Prader-Willi Syndrome (which also affects every race around the globe, but only 1 in 20,000 people) fundraising is a daunting task. BUT we’re blown away every year by the family, friends, co-workers, and even complete strangers, who have heard about Chloe and PWS, and sponsor our family for the One Small Step walk. Donations big and small. Every dollar helps. And every day we hope for that big breakthrough and are encouraged by the Foundation’s research projects - all funded by you. Thanks for helping Chloe!” 72 amazing families are hosting events around the world this year and raising funds for Prader-Willi Research. Funds from One SMALL Step walks will be used to advance Prader-Willi Research by:

  • Creating a Global PWS Registry
  • Supporting PWS working groups
  • Supporting Investigator Initiated projects
  • Providing resource sharing grants to researchers
  • Preparing for PWS clinical trials and
  • Implementing the PWS clinical trials initiative

Download details on our 2013 Research Program for more information on how YOUR One SMALL Step funds will be used. You can get involved with One Small Step -- participating is easy! Register for a walk near you or participate "virtually" under our virtual event by creating a personal fundraising page and sharing it with your family and friends. Of course if you are interested in hosting your own One SMALL Step event, we would love to have you join our team of hosts! Please let me know if you need any help getting started! I have lots of fundraising tips I can share with you and I am happy to help!

Topics: Research

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 natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.