National Ataxia Foundation Partners with Biogen to Bring Bill Nye "the Science Guy" Back To the Lab With New Series About Friedreich Ataxia

25.09.25 14:00 Uhr

MINNEAPOLIS, Sept. 25, 2025 /PRNewswire/ -- The National Ataxia Foundation (NAF) today announced the launch of The Science Guy: Back in the Lab for FA, a new educational campaign to raise awareness and understanding of Friedreich ataxia (FA), a rare, genetic disease. The campaign, in partnership with leading biotechnology company, Biogen Inc., features a four-part series starring Bill Nye "the Science Guy," who uses his iconic teaching style to break down the complicated science behind FA. In observance of International Ataxia Awareness Day, the first episode is available today at TheScienceGuy4FA.com, with new episodes launching weekly.

Experience the full interactive Multichannel News Release here: https://www.multivu.com/national-ataxia-foundation/9357851-en-national-ataxia-foundation-biogen-bill-nye-the-science-guy-back-in-the-lab

The Science Guy: Back in the Lab for FA Logo

"Bill Nye has been a remarkable ataxia advocate and partner with NAF over the last few years, bringing greater national awareness and clarity on how to support ataxia patients and their families," said Andrew Rosen, CEO of the National Ataxia Foundation. "Partnering with Bill Nye and Biogen to launch The Science Guy: Back in the Lab for FA shines an even brighter spotlight on FA so more people understand how it's different from other conditions, the significance of genetic testing, and how to get the care they need."

Each episode takes viewers on a nostalgic journey into Bill Nye's iconic lab, where he explains how a genetic mutation leads to FA symptoms. With the help of Christian, a researcher who has FA, and a quirky cast of characters, Bill describes how the disease is inherited, what happens in the body to cause symptoms, and how to get properly diagnosed through genetic testing.

"Ataxia runs in my family, so I'm all too familiar with its symptoms. People have trouble with walking, talking, and even swallowing. When it comes to our health, understanding what causes these symptoms helps a person cope and prepare," said Nye. "I'm excited to be back in the lab with support from NAF and Biogen to present these episodes and explain the science of Friedreich ataxia. I'm hopeful that these videos will help patients and family members understand what might be happening, so that they can get a proper diagnosis and take the appropriate steps."

FA is an inherited, progressive, and debilitating neurodegenerative disease that affects approximately 5,000 people in the U.S. and 15,000 people globally.1 Early symptoms include loss of coordination, muscle weakness and fatigue and progress to vision impairment, hearing loss, slurred speech, aggressive scoliosis, diabetes mellitus, and serious heart conditions.2 Many people with FA require the use of a walking aid or wheelchair within 10-15 years after symptoms start.3

What Makes Friedreich Ataxia Different
There are many different types of ataxia, and while FA is rare, it is also one of the most commonly inherited genetic forms of ataxia.4

FA is caused by an abnormality of the frataxin (FXN) gene and levels of FXN in the spinal cord and brain are much lower than normal in people who have FA.5 Since FA is rare and symptoms can resemble those of other diseases, the time to diagnosis can take up to three years on average.6

A physical exam by a doctor and various tests and evaluations are usually performed to rule out other conditions or potential causes of symptoms, but a genetic test that includes a GAA triplet-repeat expansion analysis is the only way to most accurately confirm a diagnosis of FA.7

If you think you may have FA, talk to your doctor. To learn more about the signs, symptoms and science behind FA, check out the first episode from The Science Guy: Back in the Lab for FA at TheScienceGuy4FA.com.

About the National Ataxia Foundation (NAF)
Founded in 1957, NAF is a nonprofit organization established to help persons with ataxia and their families. The Foundation's vision of a world without ataxia will be accomplished through its primary programs of funding ataxia research, providing vital programs and services for ataxia families, and partnering with pharmaceutical companies in the search for treatments and a cure. NAF works closely with the world's leading ataxia researchers, promoting exchanges of ideas and innovation in ataxia discovery.

View Organization Profile

MEDIA CONTACT:

Stephanie Lucas
Communications Director
stephanie@ataxia.org
763-231-2744

  • Friedreich's Ataxia - Symptoms, Causes, Treatment | NORD. (n.d.). Rarediseases.org. Last accessed August 2025: https://rarediseases.org/rare-diseases/friedreichs-ataxia/#affected 
  • National Institute of Neurological Disorders and Stroke. (2023, February 14). Friedreich Ataxia | National Institute of Neurological Disorders and Stroke. Last accessed August 2025: https://www.ninds.nih.gov/health-information/disorders/friedreich-ataxia 
  • Parkinson MH, Boesch S, Nachbauer W, Mariotti C, Giunti P. Clinical features of Friedreich's ataxia: classical and atypical phenotypes. J Neurochem. 2013 Aug;126 Suppl 1:103-17.
  • Williams CT, De Jesus O. Friedreich Ataxia. [Updated 2023 Aug 23]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025 Jan-. Last accessed August 2025: https://www.ncbi.nlm.nih.gov/books/NBK563199/ 
  • Friedreich Ataxia (FRDA) Fact Sheet. National Ataxia Foundation. Last accessed August 2025; https://www.ataxia.org/wp-content/uploads/2023/08/Friedreich-Ataxia.pdf 
  • Orphanet J Rare Dis. 2020 Aug 3;15:198. doi: 10.1186/s13023-020-01475. Last accessed August 2025: https://pmc.ncbi.nlm.nih.gov/articles/PMC7397644/#Sec9 
  • Wallace SE, Bird TD. Molecular genetic testing for hereditary ataxia: what every neurologist should know. Neurol Clin Pract. 2018;8(1):27-32.
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    Bill Nye behind the scenes of The Science Guy: Back in the Lab for FA

     

    Bill Nye behind the scenes of The Science Guy: Back in the Lab for FA

     

    Bill Nye behind the scenes of The Science Guy: Back in the Lab for FA

     

    Bill Nye Headshot

     

    Andrew Rosen, CEO, National Ataxia Foundation Headshot

     

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    SOURCE National Ataxia Foundation