Walk for Talk: Event brings awareness of vocal cord disorder

By Nikki Link

Playa Vista residents are being asked to help bring awareness of a rare vocal cord disorder this fall. The fifth iteration of Walk for Talk kicks off at 10:30 a.m. on Saturday, Oct. 19 in Playa Vista at 6241 Crescent Park West. Now in its fifth year, this event is organized by Dysphonia International (DI). The organization is currently in its 35th year.

“We are dedicated to improving the lives of people with spasmodic dysphonia (SD) and related voice conditions through research,” said Kimberly Kuman, the organization’s executive director. “We fund research grants, we do education and awareness, and then we also provide support.”

The condition affects around 1 in 100,000 people.

“We started Walk for Talk in 2020, during the pandemic, essentially, as a way to bring our community together,” she continued.

What initially began virtually, moved offline as people once again began to gather. Today, Kuman explained, dozens of Walk for Talks take place all over the country.

“We probably will have about 20 to 30 this year across the U.S.,” Kuman said.

Locally, the event has been organized by Toni Gold, a resident who has lived with SD for decades.

“I was diagnosed in my 20s more than 50 years ago,” she said.

She went on to say she was lucky enough to have been living in Los Angeles where there were doctors familiar with the condition. Oftentimes, it takes individuals years and a handful of specialists to get a diagnosis.

“The problem is that when a doctor looks at your vocal cords through an endoscopic exam, the vocal cords look normal,” Gold explained.

“Spasmodic dysphonia is a rare condition that affects the voice, and it is related to and commonly co-occurs with vocal tremor,” Dr. Michael Johns, MD, said. “These are neurological conditions where the problem is centered within the brain movement control centers, and this leads to involuntary movements in the body. For spasmodic dysphonia … the abnormal movements are in the larynx and vocal cords.”

Johns is the director of USC Voice Center, as well as a professor in the university’s Department of Otolaryngology Head and Neck Surgery.

“Voice disorders, in general, are very impairing to people because the voice is the primary way that we communicate,” he continued. “So, this affects people in all domains of their life … We don’t have a cure for this particular condition.”

One of the goals of Walk for Talk is to help raise money to find one.

Currently, SD is only treatable with “botulinum toxin injections into the various muscles in and around the larynx to stabilize voice,” Johns added.

Those injections are more commonly known as Botox.

“We’re treating symptoms,” Johns said. “We’re not treating the condition in and of itself.”

That’s why Playa Vista residents are encouraged to turn out to support “Team Toni” on Oct. 19.

“There is no cost to participate, no registration fee or anything like that,” Kuman said. “It’s about inclusivity and connection. We do have swag and things that people can buy. It is a fundraiser, and all donations are matched, which is really wonderful.”

As an organization, DI has a goal of raising $100,000 this year, which Kuman said, its closing in on. Anyone interested in donating directly to Team Toni can visit givesignup.org/teamtoni2024.

General donations to DI can be made at dysphonia.org by clicking on the “donate now” button.

For those who wish to participate in the walk — individuals and families alike — can meet at 10:30 a.m. in front of Gold’s condo for a walk around the neighborhood. Participants are encouraged to bring a bagged lunch to enjoy al fresco afterwards. Gold will be providing water and dessert. Pets are also welcome.

“We want to include the community,” Kuman said. “It’s our health care professionals, our speech language students, our families.”

Gold explained that last year, a couple dozen turned out for the event. This year, she expects even more. Residents are encouraged to register in advance. Although there is no fee, it helps DI keep track of how many people participate. That can be done at givesignup.org/Race/Register/?raceId=98048.

Gold, Johns and Kuman shared a similar sentiment when it came to what they hope people take away from Walk the Talk.

“There is a community out there that is here to support and that we’re working (together) to fund research and we’re working to find answers,” Kuman said. “That community comes together through Walk for Talk.”

Walk for Talk
WHEN: 10:30 a.m. Saturday, Oct. 19
WHERE: 6241 Crescent Park West, Playa Vista
COST: Free
INFO: To register for the walk, visit givesignup.org/Race/Register/?raceId=98048
To donate to Team Toni, visit givesignup.org/teamtoni2024
To donate to Dysphonia International, visit dysphonia.org
To contact Toni Gold, email toni.gold2@gmail.com