About Finding Hope for Frizzle (FRRS1L)

• Finding Hope for Frizzle (FRRS1L) is a Colorado-registered 501(c)(3) nonprofit organization founded in 2021. We are a parent-led organization dedicated to reducing the suffering and struggle of individuals affected by Frizzle (FRRS1L) genetic disease, by developing Frizzle gene replacement therapy.

• Our work is guided by three core mission areas: community, treatment development, and awareness. At the center of our mission is the development of a gene replacement therapy for FRRS1L. We are actively advancing through the drug development process and are currently in the manufacturing stage.

• Finding Hope for Frizzle is 100% responsible for funding the treatment development program. We operate with no paid staff, ensuring that all donations are directed exclusively toward the critical steps of treatment development.

• Our treatment program is established, and key partners have been identified. To move forward, we are executing a strategic fundraising plan to raise the remaining $4 million needed to initiate clinical treatment. Our goal is to begin treating FRRS1L patients in a clinical trial by September 2026.

• We are actively seeking donors and sponsors to help us bring this treatment across the finish line—transforming years of research and dedication into real hope for patients and families who are desperately waiting for treatment.