Bill Nye is one of America’s most popular science educators and is now lending his well-known TV persona to a campaign seeking to highlight a rare neurological disease.
Known as ataxia, which forms a group of disorders that affect coordination, balance and speech, Nye is teaming up with the U.S. National Ataxia Foundation (NAF) which sees him become a “Bill Nye Ataxia Advocate.”
There’s a personal reason for Nye’s involvement 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.
As part of the campaign, Nye has a subsite on the NAF website that educates people on the disorder, asking them to sign up with their details to become a Bill Nye Ataxia Advocate. It comes with trademark Nye videos explaining ataxia. There is also a detailed video about Nye’s family history with the disease.
There are few specific drugs for ataxia although there has been some success for biopharmas in recent years looking to treat certain elements of the condition.
This includes Biogen, through its buyout of Reata, and the recent FDA approval of Skyclarys for Friedreich’s ataxia, the most common inherited ataxia, according to Biogen.
Here, patients often develop initial symptoms during childhood, including progressive loss of coordination, muscle weakness and fatigue.
Biohaven also this month reported positive new data for its investigational troriluzole in spinocerebellar ataxia in a key phase 3 test as it now eyes a potential FDA approval in the next year.
Biogen and Biohaven are two of the largest corporate donors to the NAF, according to its most recent 2022 annual report, though it also has a major list of pharma donors, including Takeda, PTC, Pfizer and around a dozen more. There are no direct mentions of any medication or pharmas in the Nye campaign.
“For people living with Ataxia, the common aspects of daily life are a continuous challenge,” said Andrew Rosen, chief executive of NAF, in a release.
“To build greater understanding and empathy of the debilitating burden of Ataxia, it takes the collective voices of many across the scientific, medical, and advocacy communities. We are grateful to Bill Nye for lending his familiar and trusted voice to shed light on Ataxia and spur continued progress on new treatments and an eventual cure.”