Greetings! Bill Nye here.
Thanks for your support of the SCA27b Ataxia Foundation (sca27b.org) and the National Ataxia Foundation (ataxia.org). Ataxia predominately affects the motor coordination center (cerebellum) of the brain. Ataxia is a progressive neurodegenerative disease marked by loss of coordination, balance, and muscle control. In my family, we can trace “The Darby Glide” (now identified as spinocerebellar ataxia type-27B, SCA27B) back for centuries. I am hopeful that by spreading awareness, we can come together to help accelerate research efforts to better understand and treat ataxia.
Please take time to watch and share the videos below. They are the product of a collaborative effort from me, the SCA27b and National Ataxia Foundations, and Structure Films.
Let’s beat this thing!
Click HERE - What is Ataxia? Video #1
What is Ataxia?
Ataxia is a rare brain disease that affects a person’s ability to walk, talk, and use fine motor skills. Symptoms are caused by damage to the cerebellum, which is the part of the brain responsible for coordinating movement. Complications from the disease can be serious and debilitating. Ataxia is a condition that affects Bill Nye’s family, which is why he has partnered with the National Ataxia Foundation and the SCA27b Ataxia Foundation to help people learn about Ataxia. To learn more about the specific symptoms of SCA27B, check out our home page https://www.sca27b.org/ and https://www.sca27b.org/faqs To learn more about support and educational resources for SCA27B go to https://www.sca27b.org/resources
Click HERE for the video about ataxia in Bill Nye’s family - SCA27B, the Darby Glide, Video #2
SCA27B - "The Darby Glide"
Before the gene mutation was discovered, Bill Nye’s family knew there was a hereditary condition that affected some members of the family. They referred to it as “The Darby Glide.” It referred to the family name and the unsteady gait that was present for the affected family members. Thanks to science, we now know that what they referred to as “the Darby Glide” is called Spinocerebellar Ataxia type 27B, or SCA27B. To read more about the history of the Darby Glide in the Nye/Darby family go to https://www.sca27b.org/familyhistory To learn more about the genetics of SCA27B, check out https://sites.google.com/umich.edu/sca27b/home
Click HERE to view Video #3
Ataxia Symptoms & Potential Treatments
For people with Ataxia, degeneration in the cerebellum causes trouble coordinating movement. Many symptoms of Ataxia mimic those of being drunk, such as slurred speech, stumbling, falling, and incoordination. Symptoms worsen over time and may eventually result in the need for mobility devices, such as walkers or wheelchairs. To learn more about the specific symptoms of SCA27B, check out our home page https://www.sca27b.org/ and https://www.sca27b.org/faqs
Click HERE to view the final video, #4
Ataxia Genetics
Hereditary Ataxias are passed on from parents to their children, often times affecting many generations of the same family. You can see in Bill Nye’s family tree that there are some instances where Ataxia affects many siblings, and others where it skips a generation entirely. Researchers are hard at work to better understand how other genes and lifestyle/environmental factors influence the age of onset and progression of symptoms. SCA27B is caused by a GAA repeat expansion in the first intron of FGF14. Many hereditary ataxias are caused by different repeat expansions in other genes. To learn more about the genetics of SCA27B, check out https://sites.google.com/umich.edu/sca27b/home
Drs. Pellerin, Danzi, Brais, and Zuchner meet with Mary Hogan and Bill Nye to discuss SCA27B research opportunities. Annual Ataxia Conference 2024
Thank you for taking the time to learn more about ataxia and SCA27B! Together, we can increase awareness and treatments for ataxia. The future is hopeful to bring about a cure.
All the best from our family to yours,
Mary & Bill
Click HERE for Bill’s interview about ataxia with PEOPLE magazine
