Advocacy by and for brain tumor survivors, their families and friends is driven by the fundamental and dramatic nature of the disease and its consequences. For adult patients and for parents of affected children, the trauma of diagnosis, the potential life-threatening nature of the disease, and the anguish of deciding amongst intensive treatment alternatives are life altering events. The current chapter describes how brain tumor advocacy has evolved from these experiences into local and national action intended to improve the pace of research and the quality of care for survivors and families. It is based upon the experiences of a parent who lost a child to a brain tumor and from a long-term survivor, both of whom, like hundreds of others across the country, have served this community.
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