Every ALS Patient in New Jersey to Get Free Eye Gaze Technology
Fiaz Mohammed / Unsplash
Thanks to a new partnership, every amyotrophic lateral sclerosis (ALS) patient in New Jersey, about 400 in total, will have free access to eye gaze technology that can aid them in communicating.
As the name suggests, this assistive technology helps people with neurodegenerative diseases, such as ALS, to communicate using their eyes.
The $1.1 million effort is being underwritten by the new philanthropic organization ReNew Jersey — an umbrella group dedicated to niche initiatives like this one — in collaboration with the nonprofit Bridging Voice. According to the partners, it’s the first time a charity has provided funding for a state’s entire ALS population.
Bridging Voice equips ALS patients with eye gaze technology — and provides any needed computer or other technical support — that allows them to communicate. That’s proven particularly important during the COVID-19 pandemic, which has exacerbated the isolation many ALS patients feel, the organization said in a press release announcing the initiative.
“Assistive technology is crucial,” said one Bridging Voice patient. “Without it, I can’t tell my kids how much I love them.”
ALS is a progressive disease that affects nerve cells in the brain and spinal cord. Over time, it renders many patients unable to move or speak, even though brain function remains intact. Using eye gaze technology, these patients can, for example, send texts and emails, surf the Web, and operate remote controls.
Funds for the project were raised by the New Jersey Pandemic Relief Fund, from which ReNew Jersey was founded.
“We’ll never get tired of seeing New Jerseyans helping our own,” Phil Murphy, New Jersey’s governor, and his wife, Tammy, said a joint statement.
“So, when we say we need to make sure that all residents have access to the technology that will make their lives easier, that includes ALS patients, whose isolation has only intensified because of the COVID-19 pandemic,” the pair said. “We’re grateful that organizations like Bridging Voice exist to provide critical support so that ALS patients can communicate with their families, caregivers, loved ones, and friends. We’re proud to support this beyond worthwhile cause.”
Both Murphys donated to this effort, as did Josh Weinreich, a ReNew Jersey founder.
“New Jersey always looks out for its own, and that’s why we’re proud to announce a first-in-the-nation program to give every single ALS patient in New Jersey access to Bridging Voice’s services,” said Weinreich, who was a top contributor. “Now, they’ll be able to communicate with their families and friends more easily.”
The hope is that the New Jersey initiative will lead to similar provisions in other states as Bridging Voice seeks to expand its reach nationally. In addition to the 400 patients, the New Jersey effort will benefit some 4,000 ALS family members and caregivers.
“Already helping over 750 ALS clients in 45 states, Bridging Voice is proud to partner with ReNew Jersey to bring our technology and expertise to New Jersey’s ALS population,” said Peter Bloom, Bridging Voice’s board chair.
New Jersey patients or caregivers may visit this site to learn more about Bridging Voice and to sign up. The organization provides technology education, training, and ongoing technical support.
They also can hear the stories of Bill and Dorothy Diana from Mantoloking, as well as Sandy Edelman and Dorothy Pao from Jersey City, who have continued to connect and communicate with others thanks to Bridging Voice’s eye gazing devices.
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