Fundraising

If you spend a little time with me, you know Ellie will be brought up!  The conversation will eventually lead to PWS and our journey...after all, day in, day out, it is my life.  I tend to be an open book when discussing our PWS journey, because I want people to know about it, ask about it, know how to support us effectively, and ultimately pray for our sweet girl. 

But anyone who knows me well, knows that my heart and soul lies in PWS fundraising.  Seriously, I stay awake at night brainstorming ways to raise funds for PWS.  I think about ways to reach the community, ways to cultivate corporate sponsors, ways to improve our annual One SMALL Step event, ways to reach just one person that might believe in our story and mission.  I even was blessed to be hired by The Foundation for Prader-Willi Research (FPWR), one organization that has provided so much encouragement, inspiration, and hope to David and me.  

All these events, ideas, and talk of fundraising drive my poor husband absolutely crazy.  All he has to do is look at me, and knows when I have the fundraising glimmer and "look" in my eye.  He, along with our families & friends, have been such supporters as we have set out to fundraise for Ellie and others with PWS.

For the past two years we have partnered with FPWR and hosted One SMALL Step 5K/Walks.  Each year we raised close to $25,000 for PWS Research!  The day means more to me than fundraising...it is a day of celebration, empowerment, and healing for our family and others with PWS.  Seeing individuals in the community, our family, friends, colleagues, and other PWS families come together to exercise, fellowship, and fundraise for this important cause gives me chills.  It helps me know we are not alone, and shows all individuals with PWS that we are here to support them and work to find treatments that will give them the best life possible.

Why is fundraising for PWS crucial?  Each day that passes, Ellie and others with PWS become a little older.  That means that she and others are closer to experiencing the phase of ever-ending, cruel, constant hunger.  There are many individuals living with this horror every day.  As a mother, this kills me. The time is now to fundraise.  Who knows, the more our story is shared, the more likely that someone might take notice, and have the passion to help my daughter and her amazing friends with their funds.  I choose to believe that this will happen, and one day very soon, Ellie and her friends with PWS will Live Life FULL.