It is with a heavy heart that we share the sad news that John Repczynski, ALS Network Advisory Trustee and dear friend to many, died March 20, 2024 after a more than ten years battle with ALS. It is an understatement to say that John lived a wonderful, extraordinary life before and after his ALS diagnosis.
John literally spent his life focusing on other people. As a camera operator, director, and producer for over 45 years, John had to be acutely aware, even anticipate, the movement of actors and athletes that he was filming, often synchronizing his own actions with theirs. Throughout his career, he was accustomed to being a “behind the scenes” person of influence.
He worked on a wide and diverse range of projects including public broadcasting programming, sporting events, popular television shows, and even prestigious award shows, such as the Oscars. For his efforts, John himself won seven Emmy Awards and has been nominated 27 times. To work at this level in his field requires that a person have tremendous fine motor skills, mental stamina, discipline, and technical ability.
After receiving his ALS diagnosis, John and Sandy, his high school sweetheart and wife of 53 years, decided it was time to leave Los Angeles and retire to their condo in Hawaii. After moving, John and Sandy searched the internet for resources and connected with the then Golden West Chapter of the ALS Association.
John and Sandy then began their service to the ALS community. They participated in many awareness events and advocacy efforts in Hawaii. They became longtime volunteers for the Hawaii Walk to Defeat ALS. John shared his story to help with changing the public perception of what it meant to live with the disease. He has also used his talents in other ways, including helping with producing a public access television series in partnership with the ALS Network, entitled, “Your ALS Connection,” which was broadcast in Hawaii on the Olelo network.
The Repczynski’s did not face the daily challenges of ALS alone but with friends, loved ones, and an amazing local “ohana”. The Hawaiian word “ohana” means family, but it means more than just immediate relatives and encompasses the spirit of inclusion and love and sharing within a community.
As leaders in the Hawaii ALS community, John and Sandy always went above and beyond to help others facing ALS gain access to information, friendship, and support. The gift of his time and many talents in service to the ALS community, the state of Hawaii, and the entertainment community will forever be deeply appreciated and fondly remembered.
We are so thankful for his time as one of ALS Network’s most cherished advisory trustees. John was a tremendous human being who contributed so greatly to everyone affiliated with the ALS Network (formerly the ALS Association Golden West Chapter), and that will continue to be the case long into the future.
We will miss his smiling eyes and funny stories. Our heartfelt condolences go out to Sandy, their family, and many loved ones.
If you would like to make a donation to the ALS Network in memory of John, please click or tap the donation button below and, in the Gift Recognition section of the form, specify John Repczynski as the honoree.
All funds will be reinvested in Hawaii’s ALS care services program and advocacy efforts.