Bill Nye Becomes Advocate for New Ataxia Awareness Campaign

Bill Nye, the renowned and beloved “Science Guy” science communicator, has endorsed a new campaign aimed at raising awareness for ataxia, a rare neurological disorder that affects coordination and movement.

Nye, who has brought his passion for science education to TV screens for decades and is also known for his advocacy, is using his platform to help bring attention to the often-overlooked condition, encouraging support for research and improved care for those affected.

Nye’s involvement in the ataxia campaign is also personal as he has a family history of spinocerebellar ataxia (SCA) type 27B, a form of ataxia that leads to loss of coordination and muscle control.

For the campaign, Nye has teamed up with the National Ataxia Foundation (NAF). On his landing webpage on NAF’s website, he describes the word “ataxia,” which originates from the Greek word “lack of order,” and likens it to “no-taxi,” as in not being able to get around easily.

The Ataxia awareness campaign came together on International Ataxia Awareness Day (IAAD), which is marked on September 25 every year.

Ataxia is a rare genetic condition that results from damage to the cerebellum or spinal cord. People with ataxia experience symptoms such as difficulty walking, speaking and maintaining balance, all of which progressively worsen over time. There are currently no cures with current treatments having a focus on symptom management and improving quality of life.

In the US, it is estimated that around 150,000 people are living with some form of ataxia. This includes both inherited and acquired types of the disorder, with Friedreich’s ataxia being the most common genetic form. The prevalence of ataxia can vary depending on the type, and because it is a rare condition, awareness and diagnosis rates are often lower than for more common diseases.

Related: Brain Awareness Week 2024: A Spotlight on Brain Health and New Treatments for Neurological Diseases

In the statement on the webpage, he explains: “In my family, our form of ataxia causes difficulty walking and trouble with fine motor movements. I am hopeful that by spreading awareness, we can come together to help further research efforts to better understand it. Please take some time to click around and learn more. Thank you for your support!”

People can sign up to be a “Bill Nye Ataxia Advocate” on the NAF website to stay up-to-date on the latest advocacy initiatives and progress in treatments, the foundation said in a press release.

Nye also shares his family history of the rare neurological disease in a video, one of four videos in total, as part of the campaign. Nye shares that his sister, brother and many of his cousins have the condition.

Nye’s involvement brings visibility to ataxia, supporting initiatives that educate the public and fund advancements in treatment, diagnosis and patient resources.

There are currently limited treatments for ataxia, but there has been progress in the space recently. Notably, Biogen’s acquisition of Reata Pharmaceuticals led to the US Food and Drug Administration (FDA) approval of Skyclarys (omaveloxolone) for Friedreich’s ataxia, a genetic form of the condition. The rare disorder typically begins in childhood, causing coordination issues, muscle weakness and fatigue.

Additionally, Biohaven recently reported positive Phase III trial results for troriluzole, which is being developed for spinocerebellar ataxia. Biogen and Biohaven are among the largest supporters of ataxia research initiatives and are NAF’s largest donors, alongside other major pharmaceutical companies.

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