Speaking Up: UT Student Helps Create Voice Donation Platform

By Amy Madden in 40 Acres on August 14, 2013 at 1:34 pm | 1 Comment

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Do good things, please.

That’s the message Megan Vo, an advertising senior at UT, and two other summer interns at the ad firm Bartle Bogle Hegarty were given when they started 10 weeks ago.

Left to their own devices, the trio spent three weeks brainstorming how they would do good this summer. A number of ideas were tossed around, and the group eventually settled on creating Speak for ALS, the first-ever voice donation platform for people with ALS, a disease that eventually inhibits patients’ ability to speak.

“We landed on this universal insight that when you can’t speak, words mean everything to the people that you love,” Vo says. “Speak for ALS is the first online platform where people can literally donate their voice for a cause.”

ALS, or amyotrophic lateral sclerosis, is often referred to as Lou Gehrig’s disease after it took the life of the former New York Yankee. The disease progressively breaks down muscles, eventually leading to paralysis.

“It’s a degenerative disease, so your muscles just gradually degrade and you can’t use them,” Vo says. “The progression of [the muscle loss] varies from person to person … but you lose the ability to move and speak.”

Patients in the earlier stages of ALS often still have control of their hands and are able to communicate using relatively inexpensive methods like iPad apps. But once patients can no longer use their hands, machines that track eye movements and translate them to speech are generally needed for communication—and they’re not cheap.

“If you were to pay for it out of pocket, it would probably be around $14,000 for an eye gaze device,” Vo says. “And a lot of times, insurance companies say it’s not a medical necessity.”

While Speak for ALS doesn’t solve that fundamental problem, the project is an important first step in raising awareness about the disease. Vo says that ALS doesn’t have the celebrity status that some other diseases have, and it can be hard to get the word out when many people with the disease literally can’t speak up about it.

“It’s more about raising awareness,” Vo says. “We wanted to create a simple yet creative platform. By donating your voice, you become actively aware of the situation.”

Depending on the progression of their ALS, patients convey their message to their families in the way best suited for them—via iPad, typing, or simply speaking as best as they can. Then the family emails the message to Speak for ALS, and the group uploads it to the project’s website. Via crowdsourcing, anyone wishing to donate their voice can simply go online and record themselves reading the message.

Vo and the other interns delivered the first message last week to 58-year-old Debra, who wanted to tell her daughter that she’ll always be watching over her. Vo said it was a touching experience, and she’s glad to have been able to raise awareness about the disease.

“I think through this project, I’ve given awareness to people who would never ever even think about [ALS],” she says. “A lot of people criticize advertising for being a pretty bad industry, but it doesn’t have to be like that. And this project was an example that you can use advertising as a vehicle to get your voice across for good.”

Once the last three messages are delivered, Vo hopes the trio’s work this summer can be turned into a permanent project that would continue allowing ALS patients to leave their families lasting messages via crowdsourcing. But for now, the interns are focused on finishing what they started.

“Donate the voice. We still have three more messages to deliver,” Vo says. “It’s just the beginning.”

Tags: ALS, Lou Gehrig's disease, Megan Vo, Speak for ALS