Marlys Anderson was an independent woman who worked a full-time job and had a husband and two children, but she was mortified that strangers might consider her under the influence in public.
The Roseville woman wouldn’t imbibe, but she was impaired. In 1964 at age 43, Anderson was diagnosed with a hereditary form of ataxia, a group of rare and often fatal neurological disorders that deteriorate the cerebellum, brain stem and spinal cord regions controlling coordination, balance and speech.
In a 30-year fight against ataxia, Anderson would lean on the counters in her kitchen and on her family in public before the disease took her ability to support herself and a wheelchair was required after she fell and broke her knee. Her speech slurred, and swallowing became difficult. “She really battled and powered through it to the end,” says Anderson’s daughter, Lynne Volkman of Plymouth. “She was seriously independent and didn’t want the wheelchair. She was also sensitive that people thought she was drunk. There was this stigma attached to it. That it wasn’t well known.”
From its Plymouth headquarters, the National Ataxia Foundation works to change perceptions through awareness, research and support for the estimated 150,000 people with ataxia in the United States today.
A catalyst in ataxia awareness was Bob Allison, a 1960s Minnesota Twins outfielder and first baseman who was diagnosed with nonhereditary sporadic ataxia about two decades after he hit more than 250 home runs.
In the late ’80s, Allison began to struggle with coordination. The 50-something would attempt to play in old-timer baseball games and would have trouble tracking fly balls. His family thought that inability was nothing more than a baseball player past his prime, says his son, Mark.
Allison’s symptoms soon increased to include more motor skills such as balance, writing and speaking. He visited doctors, but a diagnosis eluded him for two years—a common problem as Ataxia often goes undiagnosed due to a lack of institutional familiarity. Although it’s more prevalent than amyotrophic lateral sclerosis, ALS has received widespread attention—and more diagnoses—since another baseball pro (New York Yankees star Lou Gehrig) was diagnosed with that disease in 1939.
Once Allison was diagnosed, he and his wife Betty set up the Bob Allison Ataxia Research Center at the University of Minnesota in 1990.
“A lot of doctors weren’t aware of (ataxia),” says Mark Allison, a Plymouth resident and board chairman of the research center. “Now it’s better, and that’s certainly why my father’s name is attached to it, so people are more aware of it.”
When Bob Allison passed away in 1995 at age 60, it wasn’t his regression from cane to walker to wheelchair that was most troubling; it was his inability to talk.
“He was so outgoing,” says Mark Allison. “That’s why him not talking was such a big thing. He was such a communicator. That was the most depressing thing for him.”
The Bob Allison Ataxia Research Center and the National Ataxia Foundation want to communicate an understanding of ataxia. With millions of dollars in research funding each year, the groups seek its origins and its possible treatments.
Currently, no cures are available, but Allison says there are “several promising things in line … but this takes time and a lot of money.”
Since the research center opened, more than $7 million has been raised. Meanwhile at the foundation, more than 150 studies have been conducted in 11 countries in the past 13 years.
“The goal is to accelerate worldwide ataxia research and enhance collaboration and cooperation among researchers around the world,” says Mike Parent, executive director of the National Ataxia Foundation.
The foundation began in 1957 when Dr. John Schut, a local neurologist, and his brother Henry sought to find the genetic cause of the disease that afflicted their family. Once John Schut died from complications of ataxia, his nephew Larry Schut became involved and worked with Dr. Harry Orr and Dr. Huda Zoghbi to identify the first genetic defect known to cause ataxia, according to the Minnesota Medical Foundation.
Today there are more than 60 identified types of ataxia, Parent says. In one Minnesota family, a middle-aged father and his teenage son are battling ataxia. The father can walk, while the boy is in a wheelchair, says Sue Hagen, director of patient services for the National Ataxia Foundation: “With each family, the effect are different, and it is challenging each time. With medical support and care, those with ataxia can face their illness.”
National Ataxia Foundation
2600 Fernbrook Ln. N. Ste. 119