July 27, 1937 – May 19, 2006
Few individuals have had more impact on bringing an understanding of achromatopsia to the world, than the late Frances Futterman. She is a role model for others who faced challenges in their life. She was able to not just survive, but to change the world. Frances did this in a quiet, but persistent manner. Even after her death in 2006, her work continues to touch the lives of achromats throughout the world.
Frances was born Ida Frances Howard in Texas in 1937. She grew up in the blazing sun of Ennis, Texas. She suffered from complete rod monochromatism, a form of achromatopsia. Though Frances was diagnosed at an early age, she unfortunately grew up at time when there was little understanding of her visual needs. Throughout her childhood years, she suffered in the bright Texas sun. She had little to help her vision and was not even provided with sunglasses. And as discussed by Oliver Sacks in the Island of the Color Blind:
“She had to contend with a great deal of misunderstanding and isolationism from her peers. And perhaps most important, she had no contact with others of her kind, with anyone who could share and understand her experience of the world”
- Oliver Sacks, Island of the Colorblind
Frances attended state college, then moved to Nashville, Tennessee to attend Peabody College at Vanderbilt University. There she majored in special education for the visually-impaired. Frances later taught programs in Texas, Kentucky and California including at two state schools for the blind.
By the early 1990s, she was running a counseling service for the visually impaired in Berkeley, California. In the early 1990s, more public information about achromatopsia began to appear in the media. Frances described what led her to start the Achromatopsia Network in her book, Understanding and Coping with Achromatopsia:
“In 1992 and 1993, a number of newspaper and magazine articles were published about achromatopsia, focusing in part on research being conducted at that time at the University of California School of Optometry in Berkeley. Media coverage began with a story in the campus newspaper with headlines proclaiming “‘Night people’ focus of colorblindness study” (reporting on a gathering that had taken place for research subjects and their families). Then there was a segment about achromatopsia on Cable News Network (CNN), an article on achromatopsia (written by a Pulitzer prize winning reporter) in the Medical Science section of The New York Times, and an article in Woman’s World Magazine. The Times article was published by many newspapers throughout the U.S. Of all the media coverage during that period, the Times article presented the most nearly accurate information, with the least amount of sensationalism. Because of the role I played in getting the New York Times reporter interested in writing the article about achromatopsia and because I was featured in that article and in others, I began to receive letters and phone calls from achromats and parents of children with achromatopsia all over the U.S. I decided to start a network.”
- Frances Futterman, Understanding and
Coping with Achromatopsia
Because Frances understood the isolationism that many achromats felt, she saw the need to connect people together to share their common experiences with achromatopsia. By January of 1994, Frances began publishing a newsletter for the Achromatopsia Network. And by 1996, Frances had also added a website on the Internet. She and her husband Mark worked diligently to bring information of achromatopsia to those who had the condition, but may have never interacted with another achromat.
“While she collected, composed and edited all the material for the journals and books, it was Mark who had to actually format, produce and print all these things on the computer; create and modify the web site; manage all the technical logistics of mailings, emails, etc. He was "the business" and she "the vision."
- Barry Futterman, Son of Mark and Frances
When she helped to connect Oli
ver Sacks, neurologist and writer, with Knut Nordby, scientist and fellow achromat, it spurred their amazing pilgrimage to the the Atol of Pingelap, in the eastern Caroline Island in Micronesia. Unlike the rest of the world, achromatopsia was common on this island. Everyone on the island understood what to expect from the condition, and though little was available to help those affected, they were understood by their peers and fit in easily in their culture and society. Oliver Sacks wrote the famous book, Island of the Colorblind, about their experience and the island.
Frances Futterman and thousands of the other achromats spread around the world had no island where they were understood. When Frances created the Achromatopsia Network, there was suddenly the possibility of a community of Achromats. Oliver Sacks spoke of Futterman's Achromatopsia Network in his book, the Island of the Colorblind.
“Perhaps this new network, this island in cyberspace, is the true Island of the Colorblind.”
- Oliver Sacks, The Island of the Colorblind
This important photograph submitted by her son, Barry Futterman, records the historic meeting of Frances Futterman and
Oliver Sacks. It was taken in 1994, as Oliver Sacks was returning from his famous trip to Micronesia to the "the island of the colorblind." She also met separately with Knut Nordby as he returned. It was Frances who had helped to connect Oliver Sacks and Knut Nordby through a letter she wrote to Oliver Sacks.
Frances created two wonderful manuals on achromatopsia, Understanding and Coping with Achromatopsia and Living with Achromatopsia. Her books are tremendous assets for the community of achromatopsia. The beauty of what she did was to rally the members of the network, solicit their experiences; then organize and compile these into the manuals. Every doctor working with achromatopsia patients could learn from the stories of these individuals in the books of Frances Futterman. Her website and manuals are still available online today thanks to her son, Barry.
Frances was known to thank people with the phrase, “a thousand thanks.” But, it is all those with achromatopsia, their families, and professionals who work with achromatopsia that owe Frances "a thousand thanks."