Today is probably like other Tuesdays for most people.
Not Scott Flanagan.
That’s because today — April 16 — is National Voice Awareness Day.
The day is important because the Fremont man has a rare neurological voice disorder called adductor spasmodic dysphonia in which muscles that generate a person’s voice go into spasms.
Since his diagnosis, Flanagan has worked to spread the word about this disorder, even meeting with members of Congress to request additional funding for research.
“I’m very vocal with the fact that I have spasmodic dysphonia,” he said.
Before symptoms of the disorder emerged in June 2017, Flanagan’s voice could fill a 200-seat lecture hall without a sound system.
The disorder changed Flanagan’s voice into a choppy whisper.
In October 2018, Flanagan underwent a 4 ½-hour surgery called, Selective Laryngeal Adductor Denervation-Reinnervation (SLAD), and he is expected to have 100 percent of his old voice back by next year.
Having a strong voice is important to Flanagan, who teaches quilting nationally and at Country Traditions where he’s the creative center coordinator.
“Last year, I did a fundraiser through the store and we raised almost $3,000 that we sent to the National Spasmodic Dysphonia Association to help fund research into treatments,” he said.
In late March, he went to Washington, D.C., for “Dystonia Advocacy Day.”
“There were about 100 of us with different forms of dystonia and we spent eight hours on Capitol Hill, meeting with members of Congress, requesting additional funding for the NIH (National Institute of Health) and the DOD (Department of Defense),” he said.
Dystonia can be caused by a Traumatic Brain Injury and the DOD helps fund research into it, because of TBIs that have occurred to military personnel.
“For the NIH, we were asking for them (Congress) to increase funding by $2 billion and Department of Defense by $300 million,” Flanagan said. “Dystonia research gets just a very small sliver of both of those numbers, but because by asking them to increase the funding for both of those our sliver of the pie gets bigger.”
Flanagan also was able to speak on behalf of the Dystonia Advocacy group for about two to three minutes during a State of Nebraska constituent breakfast on Capitol Hill on March 27.
U.S. Senators Ben Sasse and Deb Fischer were at the breakfast as were U.S. Representatives Jeff Fortenberry, Don Bacon and Adrian Smith.
“I got to address all of them on this request at once,” he said. “None of the other 90-some people (with dystonia) who were there got to speak directly to their Congressional members. We were visiting with their office workers for the rest of the day.”
Flanagan didn’t have time to say much to the members of Congress other than explaining that he has a neurological voice disorder and would be dropping paperwork off at their offices, asking that they support extra funding for the NIH and DOD.
He noted that some famous people like Robert Kennedy Jr. have been diagnosed with spasmodic dysphonia. So has Scott Adams, creator of the Dilbert comic strip, which runs in the Fremont Tribune. Neither Dilbert nor his pet, Dogbert, have mouths in the strip.
Flanagan added that some people with spasmodic dysphonia were very upset when they learned an actress said the evil-sounding voice in a role she used in a new horror movie was inspired by listening to someone with the disorder.
“They feel she’s making our voice demonized,” he said. “My thought is – if it brings light to spasmodic dysphonia and we can tell our story and what’s going on, it’s a positive thing.”
Flanagan plans to keep telling his story to help inform the general public and maybe even help someone else with the spasmodic dysphonia.