After Marsha passed, our family discussed what we could do to help.
First and foremost, we knew Marsha would want us to do what we could to help in finding a treatment or cure. Further, we knew that the Foundation and Surveillance Center both were operating on shoestring budget so we decided to have our first fundraiser in the fall of 2008. The first reason for holding it was obvious: to raise much needed funding, but secondly we sought to raise much-needed awareness of this disease.

Our first fundraiser, Footwork for CJD, was held in the fall of 2008, and we were told at the time by the Foundation that it was the first walk of its kind held in the U.S. The blueprint for the walk was provided by the Foundation, and the fundraiser was organized and held through the efforts of our entire family. We sought donations and prizes to be raffled off from various local businesses, as well as family and friends. We also held walks in the fall of 2009 and 2010.

In Fall of 2012 and 2013, we held a Memorial Golf Outing in Pennsylvania. We acquired golf sponsorships for each hole and had prizes donated for raffles. We also held a 50-50 drawing and, of course, there were green fees for additional revenues. Last year, we decided that we would like to do more so we decided to hold a Pennsylvania Golf Outing as well as the inaugural West Virginia Golf Outing. We have both events scheduled for this year as well.

We felt a deep sense of satisfaction and fulfillment after each of these events as we kept Marsha in mind all the while. She was a very kind and caring person who participated in similar events helping to raise funds for cancer and Alzheimer’s research.

We learned early on that it takes a group effort with a lot of hard work by everyone involved to make these events happen and, further, to make them successful.

It’s good to formulate a plan well in advance of your event and seek help and advice from the Foundation and others who have been successful holding fundraisers.