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Freyglee Borges

I am from Venezuela, South America, I am 24 years old and living a “normal life” studying at university. My Ataxia is quite rare. I got sick 5 years ago, something viral that later turned into something neurological, many tests and still no exact diagnosis. I know it affected my Read More…

Ataxia Natural History Study Workshop: Highlights from the 2025 CRC-SCA Face-to-Face Meeting

Written by Celeste Suart, PhD. Edited by the National Ataxia Foundation Research Team Our annual Katie Campbell CRC-SCA Face-to-Face Meeting was held this year from November 10-12, in Bloomington, Minnesota. This meeting focused on logistics and discussion of the ongoing Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA) Natural History Study. The CRC-SCA is Read More…

Faces of Ataxia Research: Vanessa Sanchez

Written by Victoria Martinez Faces of Ataxia Research highlights scientists whose work is supported by grants from NAF. Each story shows how our donors are fueling discoveries that bring us closer to effective treatments and a cure for Ataxia. Meet the Researcher Project title: Diverse Scientists in Ataxia Predoctoral Fellowship Read More…

Cameron Dingerson

My name is Cameron Dingerson, and I have a rare form of spinocerebellar ataxia: SCA11. The impetus for me sharing my story is the upcoming premiere of The Thirteenth Olympian, which is an original musical theater production solely written by myself and developed over the past seven years. The Thirteenth Read More…

Faces of Ataxia Research: Sokol Todi, PhD

Written by Victoria Martinez Faces of Ataxia Research highlights scientists whose work is supported by grants from NAF. Each story shows how our donors are fueling discoveries that bring us closer to effective treatments and a cure for Ataxia. Meet the Researcher Project title: Pioneer SCA Translational Award (2019): “Mechanisms Read More…

Valentina

Todo empezó a los 9 años cuando estaba en el colegio y la profesora y mi mamá se empezaron a dar cuenta que levantaba los brazos lateralmente para caminar y buscar equilibrio y también caminaba en punta me recuerdo que decían que caminaba como un pingüino en ese momento mi Read More…

A Patient’s Roadmap for Speaking Up About FDA Decisions

When the FDA issues a Complete Response Letter (CRL), it can be an emotional moment for individuals and families who are eager for progress in Ataxia research and treatment. A CRL means the FDA has completed its review and determined that the application cannot be approved in its current form. Read More…

Faces of Ataxia Research: Sabrina Phanor

Written by Taylor Stolberg Faces of Ataxia Research highlights scientists whose work is supported by grants from NAF. Each story shows how our donors are fueling discoveries that bring us closer to effective treatments and a cure for Ataxia. Meet the Researcher Project title: Pre-Doctoral Fellowship to Promote Diversity in Read More…

Denny

My name is Denny and I am 71 years old living in a small town in Northern Minnesota.  I have had a diagnosis of Ataxia (unknown origin), for twelve years. An avid outdoor sportsman, I love hunting, fishing and was a passionate long-distance runner. As the past twelve years have Read More…

Faces of Ataxia Research: Chris Lee, PhD

Written by Taylor Stolberg Faces of Ataxia Research highlights scientists whose work is supported by grants from NAF. Each story shows how our donors are fueling discoveries that bring us closer to effective treatments and a cure for Ataxia. Meet the Researcher Project title: NAF Graduate Research Fellowship (2023): “Identifying Read More…

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