The purpose of the research grant program is to advance the current understanding of Malan syndrome and identify disease-modifying treatments.  Awards are for one- to two- years; scientific investigators at all stages of their career are encouraged to apply. Grant awards are based on proposal evaluation by the Malan Syndrome Foundation Medical and Scientific Advisory Board with the approval of the Board of Directors.

The Malan Syndrome Foundation supports collaborative efforts and the sharing of information to increase the knowledge base for Malan syndrome and promote further discovery.

Special areas of interest:

  • Creating novel disease models that replicate the human phenotype

  • Increase understanding of mechanisms regulating NFIX gene expression; identification of druggable targets that can increase NFIX expression and rescue haploinsufficient phenotype

  • Identification of molecular pathophysiology associated with Malan syndrome in the central nervous system as well as in cardiovascular, orthopedic, neuro-ophthalmologic, gastrointestinal and other pertinent areas that can inform translational research for drug discovery

The Research Grant Program Guidelines can be found here

Full proposals (by invite only) can be submitted here.



Thomas Frazier, PhD, John Carroll University, Development and validation of a neurobehavioral evaluation tool, $14,200, 1-year research grant

Kathryn Hixson, PhD, University of North Carolina- Chapel Hill, Elucidating the molecular and cellular pathologies in an iPSC model of Malan syndrome to identify transformative therapies for modifying disease progression, $10,000 + an additional $10,000 provided by Uplifting Athletes, 1-year research grant


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