Why We Fundraise                                                                              Insight from Carol Mancuso, Executive Director

People would often ask me why Jim and I hold fundraisers, to which I logically answered, “Because our son has DBA.” I never really thought much more about it until July of 2010, when we experienced Camp Sunshine for the first time, and our whole world of “why” and “how come” was turned upside down! A family of five from Cleveland who had treated DBA as simply “a pill to swallow” came face-to-face with 53 other families who gathered to support and educate each other on how to navigate the bumpy road that is DBA. Initially, we felt like outsiders as we observed the diverse emotions in that room.

Some people were crying cheers of joy for connections, while others held their heads high as a representation of the hardened exterior they used to protect their bullied hearts. All eyes were filled with wonder about what camp would hold for them this year.

Throughout the week, we found ourselves unexpectedly conflicted. Our son had his ups and downs, but he had never gone through what some of these families face daily. Then, one day during camp, it hit me as I worked through many emotions. We don’t fundraise just for Trevor. we do it for ALL OF THESE PEOPLE, TOO! I realized that the children and adults who had traveled from near and far to meet on common ground—to share stories, laughter, and tears—also benefited from all the work put into planning our event. These families scraped, pinched, and saved to seek comfort from the only other people in the world who “get it.” They came to learn about the latest treatment recommendations, what grants are being funded, and who is working on what research to find a cure! 

Knowing that you are doing something good is one thing. But seeing the people you are doing good for is quite another.

As Jim and I continue each year to prepare for our next event, we are filled with frustration, fear, and exhaustion—enough so that Jim swears every year “to never do this again”… until the day of the event! When we look out upon our supporters and donors, our friends and family, Jim and I know that this is good and that this is right. Fundraising is a humbling experience that gives us a sense of pride and accomplishment but also creates an overwhelming feeling of gratitude for those who come out to support our family through not only our son’s journey with  DBA, but all those DBA families like ours. They rely on us to continue these fundraisers to fund much-needed DBA research as well as to financially sort DBA families in need.