TAMPA, Fla. — More than 15 years ago, Deanna Tedone was given a grim prognosis by doctors. In her early 30s, she received a diagnosis of Amyotrophic Lateral Sclerosis (ALS), often referred to as Lou Gehrig’s Disease.
What You Need To Know
ALS is a fatal neurodegenerative disease that affects nerve cells and limits mobility
Deanna Tedone was diagnosed with ALS more than 15 years ago
Her father, a retired orthopedic surgeon, developed a protocol to treat ALS
He believes the mixture, “The Deanna Protocol” slows the progress of the disease
“Winning The Fight” has a fundraising event in Tampa Bay on Feb. 24 called “Shoot For The Cure”
ALS is a terminal condition. Despite this, Deanna’s father was not willing to accept it.
“I told her I wasn’t going to accept it,” recalled Vince Tedone, a retired orthopedic surgeon living in Tampa Bay.
Tedone threw himself into researching the progressive neurodegenerative disease that affects nerve cells and limits mobility, ultimately impacting the muscles needed to move, speak, eat or breathe.
“I don’t think he slept,” Deanna recalls. “Maybe an hour here or there. (But) he was non-stop.”
The physician said he and his daughter made a pact.
“She would be the test case,” he said. “I would do the research.”
Tedone focused his research on the causes of the disease and how it progresses, rather than on ways to lessen the symptoms of ALS. It’s a distinction that matters to Tedone.
“Now, all we do is treat the symptoms and watch the symptoms progress to death,” he said.
Tedone believes his research revealed something that can slow the progression of the disease.
It’s a mixture of three substances: Arginine and Alpha-ketoglutarate (combined to form AAKG) and Gamma-aminobutyric acid (GABA). These are substances the body already produces, but ALS patients need more of, he said.
Tedone called his solution “The Deanna Protocol.”
He says a test of more than 40 ALS patients on “The Deanna Protocol” showed them deteriorating slower than the average ALS patient.
The website for “The Deanna Protocol” does note that while most neurologists “will not object to their patients following (the protocol),” “they will not officially recommend it.”
Tedone said that is likely a fear of liability issues. But he’s adamant it works and points to his daughter as the proof.
Deanna, who daily takes the protocol named after her, is doing well. She does physical therapy multiple times a week and believes her father’s protocol has allowed her to have a significantly better quality of life.
“I am so blessed that he’s my father,” Deanna said. “My father has given me and others quality of life.”
One of the things that came out of Deanna’s diagnosis is a group called “Winning The Fight.”
It’s a group focused on finding alternative solutions to neurodegenerative diseases like ALS, multiple sclerosis, Parkinson’s disease and Alzheimer’s disease.
“Winning The Fight” has a fundraising event in Tampa Bay on Feb. 24 called “Shoot For The Cure.”
View more information on how to take part or donate.
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