One SMALL Step

by Susan Hedstrom, mom to Jayden (PWS)

I will admit, I am not a fundraiser.  I do not like asking for money.  I do not like to approach complete strangers and give a sales pitch.  But I do like feeling empowered.  Knowing that I CAN make a difference.  When so much of our PWS lives are completely beyond our control, organizing a fundraiser was one way I could take a little piece of my life back and do something proactive!  And so I stepped out of my comfort zone.  I performed those little tasks that seemed so daunting and now, that it is all over, I can sit back and reflect on how easy it all was.  

Planning for the August walk began in January when Tanya Johnson brought several of us together for a conference call. Four months and four conference calls later, I finally started my walk planning.  My initial plan was to keep things small and simple, have maybe 20 or 30 people at the event - just friends and family; after all, this was my first time planning a walk.  Just in case, I contacted the city planning office about an event permit.  Apparently, in California you have to have a permit for any gathering with more than 50 people.  (I wonder if the family with the HUGE birthday party next to us knew this...)  So I paid the $140 for the event permit, just in case I got a larger showing than I expected.

After paying for a permit, I thought perhaps I should try to get a larger crowd.  I started brainstorming... There are lots of PWS families in Southern California, so I created a brochure boasting our event and asked the local San Diego PWS Clinic to help distribute them to their patients.  It wasn’t until after I dropped off the brochure that I realized I now had a promise to live up to - people might show up!  A little bit of fear creeped over me and the pressure was on!  I promised a fun day for the entire family so I needed to make sure I provided just such a day!!  

The rest of the planning and preparation involved securing sponsors and volunteers for the event.  I found asking sponsors for product donations required a little preparation:  a sponsorship request letter specifying the desired donation and an event brochure. The first attempts were a little rough, but it got easier after awhile.  I learned always to ask for the manager and hand deliver the request.  (An in-person meeting is memorable after all!) Despite my best efforts, the tears would come almost every time I delivered my sales pitch.  Its hard to be sincere about the challenges of PWS and not get teary eyed!   But the tears must have left an impression as follow up phone calls resulted in EVERY business I approached giving a donation!  I was amazed at the community support we received!

My nine month journey came to a blissful end.  Our One SMALL Step for Prader-Willi Syndrome, Oceanside was an event for the entire family!  Approximately 100 participants came out and walked our 2k and 5k courses raising almost $15,000 for Prader-Willi Research.  In addition to the walk, participants were able to take advantage of free massage, live music, nutritional consultation, bounce house, kid zone and silent auction.  Starbucks provided free coffee for our volunteers and walkers and T&A Produce donated strawberries for all our participants.  The event was festive and entertaining and everyone seemed to enjoy themselves as they mingled before and after the walk.

Planning a fundraiser was something I never thought I could do; in fact, I cringed at the thought of planning one!  But I can honestly say the time spent on the event was worth it and I learned a lot in the process too.  I learned I can be persistent, go outside my comfort zone, build relationships in the community and host a successful fundraising event.  I feel confident.  I feel empowered.  I know I can contribute to our Foundation and make a difference in the lives of our children.

For everyone who feels PWS has sent their lives out of control, who want to take back a small portion of their lives, who wish to advance research and DO SOMETHING to help find a cure for the syndrome that so badly affects every aspect of our children’s lives, there is something YOU can do.  You can take control.  You can help us find a cure.  You can host a walk or other fundraiser.  No matter the size, no matter the contribution.  Every donation, large or small, will take us One SMALL Step closer to a cure.