How One Family Turned March Madness into PWS Awareness

Nikol Maher, mom to Jack, turned her fear into determination using the family's love of sports.

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Tell us about your family and how you connected to FPWR.

Jack was diagnosed with PWS when he was 3 weeks old. The news devastated our family and we could not begin to explain how fearful we were for our sweet boy. In that moment, we were overwhelmed by all of the medical procedures, terminology, and services Jack needed. As we waded through this new life, we needed something to give us hope. Jack is lucky to have a big, supportive extended family who adore him. Within 6 months, his aunts and uncles decided to start a fundraiser to raise money that we could donate to FPWR.

We knew that Jack's future depended on the crucial research that FPWR was funding and we were determined to do whatever we could to support them.

Why March Madness?

Our family has always loved sports, so we decided to host a fundraiser around March Madness.  March Madness is the NCAA Division 1 Men's Basketball Tournament held every spring to determine the National Champion. Since most people we know already fill out brackets for March Madness, we thought it would be a perfect way to raise money for FPWR.

If someone wanted to know how to host an event like yours, what would your advice be? 

Our event, We Hoops to End Hunger for Jack, occurs online, and we typically send out an email to all of our participants 2 weeks before the first basketball game (3/14/17 this year). We advertise on our event Facebook page, as well as in our local newspaper and local cable channel. We ask that our participants donate to FPWR via our One SMALL Step web page ($15 per bracket). Once they have donated, they fill out an online bracket. There are many different websites that allow you to set up a bracket pool. We have used Yahoo Sports in the past, which was simple to start up.

At the end of the tournament our winners receive prizes that are donated by local businesses, sports teams, and family/friends. Our event has been so successful, raising about $30,000 in two years. Many of our participants donate significantly more than the $15 we request per bracket, and we are always so amazed and overwhelmed by everyone's generosity and support for Jack.

What is the best part about hosting a fundraiser through One SMALL Step? 

Our event's simplicity is one of the best things about it, and will hopefully encourage others to host similar fundraisers. The outpouring of support every year has given us so much strength and encouragement. It has also been a great way to spread awareness of PWS, and to share information and resources with Jack's community. And of course, knowing that we are supporting FPWR and the crucial research that we know will have a huge impact on our son's life.

 

If you're interested in setting up a March Madness fundraiser, email Sarah Peden to get started, or register your fundraiser on the One Small Step website.

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Topics: Stories of Hope

Sarah Peden

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Sarah is FPWR's One Small Step coordinator. She became involved with FPWR shortly after the diagnosis of her daughter, Lily in late 2009. She first began fundraising through her “Running for Lillian” event where she and her friends raised funds for PWS research through peer-to-peer fundraising. Sarah joined the One SMALL Step team in 2012 holding her first of many walks in Bloomington, Indiana. Sarah has held multiple volunteer roles with our organization prior to joining our staff and was the chair of our Community Leadership committee from 2014-2015. She has more than 11 years of event planning experience with for-profit and non-profit organizations and hold a Bachelor of Science in Recreation with an emphasis in tourism, hospitality and event management from Indiana University.

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