Stephanie Blake's Story

My connection to SCA1 is deeply personal. My father lived with SCA1, and I recently lost him to the disease. I have also been diagnosed with SCA1 myself, which gives me a unique and lived understanding of both the medical and emotional realities families face. I am incredibly proud of my daughter for founding Hope for SCA1 and for turning our family's experience into a source of education, awareness, and hope for others. In addition to supporting this work, I manage an active Facebook community, SCA1 Ataxia, with nearly 400 members from around the world-families, caregivers, and individuals navigating life with this disease together.