Emily Cox is a patient advocate, research participant, and C9orf72 repeat expansion carrier navigating what it means to live at risk for familial ALS.
After losing three family members to ALS, including her dad, Pete, in 2024, Emily became deeply involved in the ALS research community. She advocates for patients, families, and those living with the knowledge that they carry a genetic mutation that may one day cause disease. She serves on patient advisory councils with Target ALS and the HEALEY ALS MyMatch program at Massachusetts General Hospital and participates in research herself, including studies following people genetically at risk for ALS before symptoms begin.
Emily is also navigating IVF with PGT-M to prevent passing her expanded C9orf72 copy to her future children. With more than 12 years working in biotech, she brings a unique perspective to clinical research, understanding both the science that leads to new therapeutics and the trials that ultimately put those therapeutics into the hands of the people who need them most.