Don Segal got involved with the American Brain Tumor Association back in 1975 when his 7-year-old son was diagnosed with a malignant grade I-II Astrocytoma. Imagine traveling across the country to Los Angeles for surgery and having the doctor come out and tell you there was nothing they could do. Surgeons closed him up and sent him home and told Don and his wife, Gail, to anticipate a limited life expectancy.
That son survived and today is an engineer with two advanced degrees. He experienced a second tumor many years later, but is doing pretty well, all things considered, according to Segal, a partner with the law firm of Segal, McCambridge, Singer and Mahoney.
“That was the dark ages in the brain tumor world,” says Segal. “There were no MRI’s, just good old-fashioned X-rays.”
In a quest to learn more about the disease, Don and his wife met Susan and Manny Kramer, fellow Chicagoans, who had just started the American Brain Tumor Association following the diagnosis of their daughter, Stephanie. “We realized this is the place where we could share our story with others who have walked the same path.”
Today, he looks back on more than 40 years of involvement with an association that started with parents asking questions to becoming one of the most respected resources for patients, their families, clinicians and researchers.
He served two terms as president of the non-profit, his wife served one and his father-in-law served a term. For the first 14 years, he served (among other duties) as volunteer executive director until a professional executive director was hired in 1989.
He’s proud of the fact that the association has supported more than 600 of the “best and brightest” young researchers in the field through more than $30 million in grants and a belief in them, helping to convince these intellectually-curious young investigators to remain in basic and cutting-edge brain tumor research in order to one day find a cure.
Roughly 80-85 percent of those who received grants early in their work have remained in the field. “It takes a particular dedication for researchers to get involved with brain tumors knowing there have been relatively little progress in a cure – although there has been progress in earlier and better diagnosis and continuing studies of treatment protocols have resulted in extended life expectancies,” says Segal.
He’s also proud of efforts to educate and inform patients and their families of the options and intricacies of today’s brain tumor world.
But is he satisfied? No. Not at all.
“Brain tumors kill people. They kill kids. The statistics have not changed much. We’re not seeing the results we see in other diseases.” Three years ago, his wife’s brother was diagnosed with a deadly brain tumor and his son’s treatment-induced tumor was diagnosed.
Calling all this frustrating and at times depressing, Segal remains passionate, committed and involved, working to appreciate the small gains: the life expectancy increases, the advances in treatment, and the far-reaching effects of the CBTUS (Central Brain Tumor Registry of the United States) which provides uniform, accurate data to the medical community nationwide.
“The brain is very different from anything else. The blood-brain barrier used to be extremely difficult to penetrate. Today there are ways to directly target areas of the brain. These little things add up.”
In our 45 years, the most dramatic advances are being made now.
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