Toni Gold doesn’t let spasmodic dysphonia define her.

The Playa Vista resident was diagnosed 50 years ago with the neurological disorder that causes the muscles that generate a person’s voice to spasm. Talking becomes difficult.

But as the leader of Greater Los Angeles Dysphonia Support Group, she’s enthusiastic about sharing her story to hopefully comfort others with the same disorder.

Gold is promoting the 2022 Walk for Talk, a four-day event to benefit Dysphonia International, formerly the National Spasmodic Dysphonia Association.

It runs from Thursday, Oct. 20 to Monday, Oct. 23, and participants are encouraged to participate in any sport or activity, ranging from kayaking to walking, alone or in a group.

The goal is to raise funds to find answers for better treatments and a cure for spasmodic dysphonia and related voice conditions.

Gold has organized her own walk from 10:30 a.m. to 1 p.m. on Saturday, Oct. 22, in Playa Vista. To participate, email toni.gold2@gmail.com or to donate, visit https://bit.ly/ToniGold2022.

“We have 15 or 20 people, some of whom, like myself, have spasmodic dysphonia,” Gold said. “We carry a large banner that says ‘Walk for Talk’ and hand out little placards to people as they stop and ask questions.

“It will inform them as to what SD is and how they can donate, if they choose. The purpose of the walk is to raise awareness and funding. The goal this year is $80,000 for Dysphonia International. Every dollar will be matched by private donors.”

Last year, Gold raised a little over $5,000. This year’s goal was $2,000 and, as of Oct. 11, she collected $3,799. Lunch on Gold’s front lawn will provided by Jackson Market and Deli in Culver City.

“They make great sandwiches and cookies,” Gold said. “It’s a thank you to those people who show up for the walk.”

Treatments

Botox injections into the vocal cords to weaken the muscles can treat the symptoms of spasmodic dysphonia. Gold said she speaks to many newly diagnosed patients who are afraid of the treatment.

“I tell them receiving the injections is no different than getting the COVID inoculation or a flu shot,” she said.

“We need to make people less fearful about getting these shots.”

Dr. Michael Johns, the director of USC Voice Center, said a local anesthetic is sprayed into the throat to increase comfort.

“You don’t feel more than a pin prick,” he added.

Johns, who treats Gold, said spasmodic dysphonia overlaps with vocal tremor, as they’re both movement disorders.

“It can be incredibly disabling,” he said. “The voice is the primary way in which we communicate. It’s very challenging because we don’t have a cure for the problem. We have good treatment.”

Treatment is often delayed due to a lack of awareness. Johns said vocal tremor and spasmodic dysphonia are diagnosed primarily by a trained listener and careful hearing of clinical features.

“There’s no blood test or clear gold standard test,” Johns said. “As a consequence, people with SD commonly go undiagnosed for years and years. We did a study that showed people see four types of specialists and go four years before they get a proper diagnosis.

“That’s because people aren’t aware of this rare condition. It’s not something you see. Oftentimes, it’s written off as having a rough day or anxiety. Sadly, for a long time, it was called a functional or psychological manifestation. It’s just not true.”

Johns said the upside is that the Botox results are not permanent and long-term problems are not associated with it. The negative is that the treatment needs to be repeated when it’s working.

“There is a need to have better understanding of the disorder in general so we can develop new treatments,” he said.

“Some work is being done in that regard. Dysphonia International is very active in this. Of note, Dr. Kristina Simonyan (at Harvard) received a very large NIH grant to study the causes of language disorders.

It’s in the $14 million range. It’s a huge grant for a rare disease. It gives us the ability to home in on this disorder with the dollars, the time and the right people. Those funds really are limited. Organizations fund diabetes, heart disease, stroke and cancer. That’s where Dysphonia International comes into play. It raises awareness and raises funds.”

Walk for Talk

WHEN: 10:30 a.m. to 1 p.m.

Saturday, Oct. 22

WHERE: Playa Vista;

sign up for details

COST: Donations

INFO: toni.gold2@gmail.com;

https://bit.ly/ToniGold2022