After her daughter sustained a brain injury in 1975 at age fifteen, and her son Jon was killed in a motorcycle accident only one year later, Marilyn co-founded both the Brain Injury Association of America (BIAA) and the National Head Injury Foundation (NHIF), both with her husband Dr. Martin Spivak.
For over twelve years, Marilyn has been the Neuro-trauma Outreach Coordinator at Spaulding Rehabilitation Hospital in Boston. She speaks nationally to promote community based supports and residential/ independent living services, as well as to advocate for more federal level support so that states can build infrastructure to better serve their clients. However, she also speaks about how far the Brain Injury community has come…
“It is important to appreciate that in the 1970s, coma was described to families in color codes -- as degrees of black to gray and dark to light! Treatment of severe TBI and care and rehabilitation of patients suffering head trauma were at best minimal.
Only 3% of those with severe brain injury survived.”