Our Mission

It is the mission of the FOXG1 Research Foundation to accelerate research to find a cure for FOXG1 syndrome.

We will fund the world's leading scientists that are integral along our Path to a Cure for all children with FOXG1 syndrome. We will continue to apply our research to solve all related brain disorders. FOXG1 is the super hero "master regulator" gene that could save millions of children with various brain disorders. We will not stop until every stone is unturned.   

We are dedicated to:

  • Finding a cure for ALL children with FOXG1 syndrome in the world

    • (all ages, all mutation types, all geographies).

  • Providing equal access to a cure for ALL children with FOXG1 syndrome in the world.

  • Continuing to uncover the links between FOXG1 and related brain disorders in order to solve these brain disorders affecting millions of children/people.

How will we do this? We will:

  • Invest in research

  • Fundraise to invest in research

  • Maintain a clear strategic roadmap to a cure

  • Strive to be within the top 1% of patient advocacy groups vying for biotech investment, like RETT Syndrome Research Trust, Grace Wilsey Foundation, and CureDuchenne

  • Lobby the best scientists in the world to work on FOXG1, keep constant contact with biotechnology companies focused on CNS disorders

  • Maintain the highest standards of fiscal responsibility

  • Maintain efficiency and integrity

  • Collaborate with foundations, scientists, professionals, biotechs, philanthropists, and parents across the globe


About BlackSwan


The Foundation’s mission is to encourage research for rare and orphan diseases. The BLACKSWAN Foundation was established in Switzerland in 2010 to contribute to the development of research on rare and orphan diseases worldwide. The Foundation supports research on all different types of rare and orphan disease, which makes its vision unique and helps in finding new solutions that can assist a large variety of projects. Besides its funding research mission, the Foundation organizes every two years the RE(ACT) Congress, which became an international reference point for rare disease experts. In three editions, more than 1,500 scientists were able to establish approximately fifty collaborations. In 2014, the BLACKSWAN Foundation launched the RE(ACT) Community a crowdfunding and a knowledge sharing digital platform that connects researchers, patients and other rare disease stakeholders.

Its goals are:

  • To collect funds directed toward research in rare and orphan diseases.

  • To support translational and clinical research by allocating resources to investigators working on rare and orphan diseases.

  • To collect funds directed toward research for a specific rare and orphan diseases (e.g. liver metabolic diseases).

  • To promote and encourage therapeutic trials aimed at developing curative drugs for rare and orphan diseases.

  • To inform the public on rare and orphan diseases.