Finding Hope for FRRS1L Mission

  • Four stick figures connected to a central heart with lines, symbolizing connection or love.

    FIND a Community

    Create a community of Hope for FRRS1L gene disorder children and families to connect, communicate, collaborate, and support one another.

  • Black and white graphic of an atom with a heart at the center.

    HOPE for a Cure

    Serve to fund research and development of gene replacement therapy treatment for FRRS1L genetic disease.

  • A black and white outline of a human head with a heart inside instead of a brain.

    FRRS1L awareness

    Share information and resources with the public, medical professionals, and researchers to increase the awareness and understanding of FRRS1L.

Goals

Families

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As we fundraise and word gets out, there are more families contacting us that have children with FRRS1L genetic disorder. Our goal is to get them connected with providing: key information, a link to join the FRRS1L Support group on Facebook, access to current research efforts, and the ability to join our efforts in funding a cure.

Fundraising

Raise money to fund the development of gene replacement therapy treatment for FRRS1L genetic disorder children. Help us fund a cure!

Donate Today

Medical Professionals

Reaching out to doctors, medical professionals, and organizations to increase awareness of FRRS1L.