I knew about Kim Peek, who was likely the most well known man with ACC, but I missed his passing recently, so here is the copy from the NODCC website. He was the inspiration for the 1988 academy award winning film Rainman.
From the Site:
November 11 1951 – December 19 2009 The NODCC mourns the passing of a dear friend and wonderful advocate. Kim Peek was the inspiration for the 1988 academy award winning film Rainman. In the film, Kim’s character is portrayed by Dustin Hoffman. Hoffman’s nuanced performance raised the visibility and understanding of autism diagnoses. Although Kim had many characteristics of autism diagnosis as well as rare savant skills, his primary medical diagnosis was agenesis of the corpus callosum (ACC).
Kim and his father Fran were keynote speakers at the DCC Conferences in 2005 and 2007. Kim spoke passionately about the need for accurate diagnosis and his own frustration about many years of misdiagnosis prior to neurological scanning that revealed ACC.
Fran Peek, Kim’s father and primary caretaker, typically avoided the spotlight. However, at the DCC Conference his story was as powerful as Kim’s. Fran’s advocacy revolutionized special education and paved the way for parent advocates today.
The NODCC extends our deep appreciation for Fran’s ongoing involvement and shares in the sadness of Kim’s passing.
The National Organization for Disorders of the Corpus Callosum (NODCC) is a nonprofit corporation established in 2002 by professionals, parents and individuals with a personal commitment to understanding corpus callosum disorders.