Margaret Guedes, CEO/Founder of Kids Beating Cancer, Receives Lifetime Achievement Award
By Sarah Ford on November 15, 2012
CEO and Founder of Kids Beating Cancer, Margaret Guedes, was presented with the H. Clifford Lee Lifetime Achievement Award today. In order to understand the magnitude of what Margaret has accomplished over the last 20 years, you must first go back and understand the years of sadness and pain that shaped her journey of passion, leadership and philanthropy.
Margaret’s story began in 1988, while she was pregnant with her 3rd of 4 children, when she had to leave Central Florida to obtain a diagnosis for her first-born son, John, at the young age of five. John’s disease, the rare and highly fatal Myelodysplastic Syndrome (MDS) that had evolved into acute myeloblastic leukemia (AML). With this aggressive disease, Margaret was told her son had only a 15% chance of survival. This increased only to 30% with a bone marrow transplant, if a marrow donor could be identified. Finding a donor was the first of many challenges Margaret faced. Families today continue to experience tremendous barriers to treatment, finding a compatible donor in the family only 20 percent of the time. Margaret was fortunate, her second child Todd, at the age of 4, was John’s perfect match. However, 24 years ago, not only could John not be diagnosed in Central Florida, but also would have to leave the state to receive a bone marrow transplant. Due to John’s age and his disease, at that time, Margaret had to travel to Seattle with her two boys and her newborn daughter. The family had to be separated by this long distance for months, while Margaret had to face life and death decisions alone, and a high crisis and complex life balancing the needs of a desperately ill child against the needs of the child who was the donor and a newborn baby, all far away from home and family for 100 plus days in Seattle. It was this first transplant and the unbelievable difficulties that ensued because of the separation from family and friends that motivated Margaret to vow that she would devote her life to changing Orlando and Central Florida so that families would never have to go through the trauma she had just experienced. Unfortunately, that ambition was put on hold when John relapsed within a few months, requiring a second transplant. At that time, he was just the 4th patient in the country to receive a second transplant for AML. With no choice at this point, it was a return to Seattle for at least another 100 days, if he survived. It was during these transplants, particularly the second one, that Margaret found the inspiration and determination that has resulted in her remarkable quest to make it possible for families who need a bone marrow transplant for their child, as their only hope for survival, to have this most difficult of treatments close to home, friends and family, right here in Central Florida.
Sad and painful times shaped Margaret’s journey of passion, leadership and philanthropy. While serving over 5,600 of the sickest children in Central Florida and their families, she has raised over 9 million dollars, maintained fundraising and administrative costs less than 4% annually, added 37,000 new potential marrow donors to the national registry, and finally, after years of tenacious advocacy, Margaret’s ultimate goal of bringing the first and only pediatric marrow transplant center to Central Florida was realized with the grand opening of The Kids Beating Cancer Pediatric Transplant Center at the Walt Disney Pavilion Florida Hospital for Children this past August 2012.
Margaret’s ability to inspire and motivate others has resulted in solidifying Central Florida as a place of healing for todays’ children and their families as well as future generations of children diagnosed with leukemia, cancer and 72 other malignant and non-malignant life threatening diseases. Thanks to Margaret and Kids Beating Cancer’s work, these children and their families now have hope.