Helping ALS patients communicate
Melissa Marantz was 28 when she passed away from amyotrophic lateral sclerosis, commonly referred to as ALS, a neuromuscular disease that affects an estimated 20,000 to 30,000 people in the United States, with an additional 5,000 being diagnosed each year.
As the disease advances, most ALS patients develop problems with their swallowing and speech abilities and/or the motor movement in their arms and legs. Most patients die with two to five years being diagnosed. There is no cure.
A vibrant young woman engaged to be married; Melissa sought help from BIDMC's Voice, Speech and Swallowing Service with the goal of completing her wedding vows - which she did.
After her death, Melissa's parents, Sid and Joan Marantz, wanted to honor their daughter - and help other ALS patients. They reached out to Cynthia Wise Wagner, Manager of BIDMC's Voice, Speech and Swallowing Service, and learned of the need to create an Assistive Technology Fund for the purchase and loan of adaptive communication equipment. The Marantz family makes an annual donation to support the fund, allowing additional computerized communication equipment to be purchased each year.
In addition, the Voice, Speech and Swallowing Service has hired a consultant who helps patients find the best option for their communication needs as they progress through the stages of ALS.
"People who can't speak can use these devices to talk; people who can't use their hands can use these devices to access computers," said Wagner. "We are so grateful and fortunate to have this help from the Marantz family in honor of Melissa."
The video below offers a glimpse into the great works being done thanks to the Assistive Technology Fund.