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Our mission as a Foundation is to generate funds for research to find a cure for Diamond Blackfan Anemia (DBA). Our additional purpose is to provide DBA Families with education when necessary and to assist DBA Families in crisis.
Throughout the last five years people have often asked me why I hold fundraisers to which I logically answered, "because my son has DBA". I never really thought much more about it until July of 2010 when my family and I 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 to be outsiders as we observed the diverse emotions in that room.
Heads, held high, symbolizing the toughened exterior used by some to protect their bullied hearts; others crying cheers of joy for reconnections made. All eyes 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 never had he gone through what some of these families face on a daily basis. And then one day during Camp it hit me as I was working through a wide range of emotions...I don’t fundraise just for Trevor...I 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 benefit 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, about what grants are being funded and who is working on what research to find a cure! These, also, became reasons to fundraise.
Knowing that you are doing some good is one thing. But actually seeing the people you are doing good for is quite another.
As Jim and I prepare for yet another golf outing we are filled with frustration, fear and exhaustion--enough so that Jim, every year, swears "to never do this again"... until the day of the event, that is, when we look out upon our supporters and donors, our friends and family, and know that this is good and that this is right. Fundraising is a humbling experience that gives us a sense of pride and accomplishment and creates an overwhelming feeling of gratitude for those who come out to support our family through our son’s journey with DBA.
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