45th Anniversary Photo - largeIt is with much sadness and regret that we announce the passing of Ismail Tsieprati on December 22, 2020.

Ismail’s cause of death was acute cardio-pulmonary arrest and pneumonia, secondary to ALS.

Beloved by many, he lived a long and happy life with ALS. Although the average life expectancy of a person with ALS is two to five years from the date of diagnosis, Ismail lived with ALS for 33 years after the date of his own diagnosis and more than 50 years from the onset of his first symptoms.

He was a former film and video editor, producer, director, and writer with more than 25 years of experience in the film and video business. He wrote many screenplays and had extensive educational film credits. Ismail was presented with a special citation from the City of Los Angeles, Department of Building and Safety, for playing an instrumental role in the initial production of the Department’s training video series. In 2003, Ismail was presented with the ALS March of Faces Vice President’s ALS Awareness and Advocacy Award for his outstanding achievements in raising public awareness of ALS. He was also a recipient of a 2017 Walk Hero Award at the 14th Annual Ventura/Santa Barbara County Walk to Defeat ALS.

Although he became totally paralyzed and no longer able to speak or write, Ismail communicated by blinking his eyes to spell out sentences one letter at a time. Using this method, he wrote posts and blogs for social media and collaborated with Cheryl on musical theatre and other writing projects. He wrote chapters for this book by spelling out each word one blink at a time.

Cheryl Tsieprati worked in the health care industry for nearly 40 years. She has more than 25 years of experience in training consulting, instructional design, writing, and editing. As a freelance journalist, she received a first place award from the Associated Press, Western Region for her work on a newspaper series “Retailing in the ’80s.” Cheryl also received an award for a comprehensive seminar she developed and facilitated for individuals with neuromuscular diseases and their family caregivers.

Together, as co-owners of a video production company in the early 1990s, Cheryl and Ismail wrote and produced several promotional and educational videotapes, including “It’s Your Choice,” a 26-minute educational video produced in 1991 which presented information and options to people facing respiratory failure. In 1993, Ismail and Cheryl wrote and produced “Caring for the Caregiver,” a 28-minute educational video with accompanying training materials for family caregivers, and What is ALS?, an informational video for the National ALS Association.