ONCE UPON A GENE – Episode 128 – Sisters’ Hope Foundation President and Founder Heidi Edwards on Recognizing ALSP Symptoms and the Importance of Genetic Testing

EPISODE HIGHLIGHTS

Where did your ALSP journey begin?

Twenty years ago, my aunt was the first to become sick with what we know now was ALSP. We’ve since had five family members pass away from the disease. I’ve lost two sisters and started Sisters’ Hope Foundation to honor my sisters, my mom and her siblings, to raise awareness and educate people about ALSP and to connect people affected by the disease. My family now has two additional people who have been diagnosed with the CS1FR gene mutation.

What is ALSP and what are the symptoms?

ALSP is a rare, progressive neurological disease that causes changes to specific areas of the brain. Mutations occur in the CS1FR gene. It’s an autosomal dominant genetic, which means a child of a parent with the gene has a 50% chance of inheriting the gene and contracting the illness. ALSP causes dementia and movement issues, and early onset symptoms include personality changes like depression, memory issues or seizures. As ALSP progresses, it causes movement issues, slow movement, difficulty walking, tremors or muscle stiffness. In early stages, it affects the left side of the body and the entire body with disease progression.