Hereditary Spinocerebellar Ataxia Type 1 (SCA1) Support, Research & Symptoms Information
Hope for SCA1 is a nonprofit dedicated to raising awareness, providing support, and advancing understanding of Spinocerebellar Ataxia Type 1 (SCA1).
Inspiring Stories, Hope, and Support.
Raising Awareness for SCA1
I’m Sydney Blake, a high school student dedicated to spreading awareness about SCA1, a neurodegenerative disease affecting my family. Join us in sharing stories and supporting vital research. This platform features personal stories from those impacted by SCA1, along with opportunities to donate and support ongoing research efforts. If you or your friends/family are affected by SCA1, please share your story in the contact information at the bottom of the website.
Our Mission Matters
Symptoms of SCA1: A Basic Overview
Spinocerebellar ataxia type 1 (SCA1) is a neurodegenerative disorder characterized by progressive problems with movement and coordination. Early symptoms often include slurred speech, gait abnormalities, imbalance, and mild dysphagia. Mild dysphagia is characterized by difficulty swallowing, which can cause food to move more slowly through the esophagus. As the disease progresses, additional symptoms may appear, such as dysdiadochokinesia, dysmetria, and cognitive impairments like difficulty making decisions. Dysdiadochokinesia (pronounced duhs-dai-uh-duh-koh-kuh-nee-zhuh) refers to the inability to perform rapid, alternating movements, a sign of cerebellar dysfunction that affects motor control. Dysmetria is a neurological condition involving poor coordination and an inability to judge distances or movement accurately. Individuals may overshoot or undershoot targets and struggle with balance, walking, and tasks requiring fine motor skills.
Citations:
Opal, P., & Ashizawa, T. (2023). Spinocerebellar ataxia type 1. In GeneReviews® (updated Feb. 2, 2023). University of Washington, Seattle. https://pubmed.ncbi.nlm.nih.gov/20301363/
Ronald Anderson
As I mentioned earlier, Spinocerebellar Ataxia Type 1 (SCA1) has affected many members of my family, including my grandfather. He passed away on August 27, 2025, at the age of 77 while in the care of Hospice of Northwest Ohio. His obituary, linked below, provides further insight into his life, character, and the legacy he left behind.
.https://www.legacy.com/us/obituaries/toledoblade/name/ronald-anderson-obituary?id=59318809
Contact Us
We would love to hear from you! Reach out for support, share your story on the website, or inquire about donations for SCA1 research.
If you would like to attach a picture with your story/message, send it to the email down below.
Connect
773-720-4388
sblake@hopeforsca1.org
Awareness
Join us in supporting SCA1 research and stories.
Hope for SCA1, inc. is an Illinois nonprofit corporation dedicated to education and awareness.
EIN: 39-3443248
contact: sblake@hopeforsca1.org
The following research initiatives are led independently by academic institutions. Hope for SCA1 is not affiliated with, does not receive funds from, and does not manage donations to these programs.
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