Bill Nye returns to his lab, with a goal of raising awareness of FA
The Science Guy's new videos aim to educate people about Friedreich's ataxia
Bill Nye's Friedreich's ataxia videos aim to entertain and educate. (Courtesy of The National Ataxia Foundation)
Bill Nye is back in the lab, with the host of the popular 1990s science education TV show “Bill Nye the Science Guy” now starring in a National Ataxia Foundation (NAF) campaign focused on raising awareness and understanding of Friedreich’s ataxia (FA).
FA is a rare, inherited, and progressive disorder. It affects approximately 5,000 people in the U.S. and 15,000 people globally.
The initiative, which also partners with Biogen, features a four-part video series called “The Science Guy: Back in the Lab for FA.” The first video was released on Sept. 25 — International Ataxia Awareness Day. A new video will launch weekly.
“Bill Nye has been a passionate advocate for the ataxia community for many years, with a personal connection through his family’s experience with spinocerebellar ataxia type 27B,” Andrew Rosen, the NAF CEO, said in a statement to Friedreich’s Ataxia News. Unlike FA, in which symptoms usually start in childhood or adolescence, spinocerebellar ataxia type 27B typically begins affecting individuals in their 50s.
“Bill’s ongoing involvement with National Ataxia Foundation, and his dedication to raising awareness about ataxia through education, made him a natural fit for this initiative,” Rosen said.
In the series, Nye uses his well-known teaching style to break down the complicated science behind FA, which primarily affects nerves and muscles. With levity, animation, and even rap music, Nye explains the ins and outs of FA. He also urges people with symptoms or a family history of ataxia to be tested, so they can get the right diagnosis.
“Ataxia runs in my family, so I’m all too familiar with its symptoms,” Nye said in an NAF press release. “People have trouble walking, talking, and even swallowing. When it comes to our health, understanding what causes these symptoms helps a person cope and prepare.”
Video series uses animation, rap music in raising FA awareness
The nearly five-minute first video begins with Nye saying, “Greetings, Bill Nye here. As you can see, I’m walking and talking. But not everyone can do this so easily. They have ataxia. And today we’re gonna talk about a particularly troublesome form of ataxia called Friedreich’s ataxia.”
FA is the most common hereditary cause of ataxia, a group of disorders marked by a loss of muscle control and coordination. Other symptoms include heart problems, speech difficulties, and skeletal abnormalities.
As someone diagnosed with FA, a condition I knew nothing about, the questions seemed limitless. … Now with Bill Nye and his incredible ability to make sense of complicated situations, FA suddenly feels less isolating. With his video, I don’t feel as alone with FA.
While the symptoms of various ataxia may be similar, FA’s root cause is very different: unusually low frataxin protein levels. The protein plays a key role in enabling mitochondria, the cell’s energy-producing organelles, to generate energy.
“As someone diagnosed with FA, a condition I knew nothing about, the questions seemed limitless,” said Matthew Lafleur, director of business development and community engagement for Bionews, which publishes Friedreich’s Ataxia News.
“Trying to adapt to my life as a disabled person was scary. What would come next? Coordination limitations, walking ability, speech issues, fatigue, cardiac? FA was a rare disease, and there was no way to determine what came next,” Lafleur said. “Now with Bill Nye and his incredible ability to make sense of complicated situations, FA suddenly feels less isolating. With his video, I don’t feel as alone with FA.”
Nye has a long-standing relationship with NAF, a nonprofit founded in 1957 to help those with ataxia and their families. He has created educational videos for the organization and attended the NAF’s Annual Ataxia Conference multiple times.
“The partnership with Bill Nye and Biogen happened organically through connections made at our Annual Ataxia Conference, the world’s largest gathering of the ataxia community,” said Rosen. “It reflects the kind of collaboration we strive for at NAF — one rooted in shared purpose and personal connection.”
Rosen added: “We’re excited to bring critical information about Friedreich’s ataxia to a broader audience through this effort.”
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