About Rett Syndrome Research Trust
Find cures for Rett syndrome as efficiently and quickly as possible by funding and advancing genetic medicines that target the root cause of Rett.
Focus Areas
Rett syndromeGene therapyBase editingPrime editingRNA editingRNA trans-splicingMECP2 reactivationDelivery technologies (viral and non-viral)Biomarkers and trackingClinical translation
Who They Fund
individuals with Rett syndrome and their familiesindividuals with MECP2 duplication syndromeresearchers and clinical consortia focused on rare neurodevelopmental disorders
About Rett Syndrome Research Trust
Rett Syndrome Research Trust Inc centers its grantmaking on genetic medicines for Rett syndrome, with funding aimed at moving therapies toward clinical trials by working on both the therapeutic "cargo" and the delivery systems. The trust’s recent awards show a repeated emphasis on RNA editing, Rett research, and the infrastructure needed to track and advance candidates. In 2024, Massachusetts Institute of Technology received $3,734,738 for RNA editing, and University of Massachusetts Medical School received $2,343,091 for Rett research. Those awards sit alongside support for Emory University, California Institute of Technologies, and University of California Davis across related research categories. The trust also backs shared resources and disease infrastructure, including grants to the Rett Syndrome Global Registry Co Rsrt and the Rett Syndrome Biorepository. Its portfolio includes MECP2-related work, mouse models, outcome measures, and biomarker-oriented projects, reflecting a research strategy that connects laboratory development with the tools needed to move rare-disease programs forward.
What Rett Syndrome Research Trust Funds
RNA editing appears as a major theme in the trust’s recent awards. It gave $3,734,738 to Massachusetts Institute of Technology for RNA editing, and also supported University of California Davis with $390,506 for the same area. Rett-focused research is another core strand: University of Massachusetts Medical School received $2,343,091 for Rett research, while Emory University received $283,945 for Rett research in 2023. The trust also funds consortium and infrastructure work. Baylor College of Medicine received $192,169 for the MECP2 Consortium, and Coriell Institute for Medical Research received $119,461 for bio repository work. Beyond direct research projects, it supports clinical measurement and registry resources, including Emerald Innovations for outcome measures and the Rett Syndrome Global Registry for Rett research.
How Rett Syndrome Research Trust Gives
Typical awards cluster above six figures, with a p25 of $51,179, a median of $104,711, and a p75 of $275,459. The recent grant list shows repeated support to several recipients across multiple years, including Massachusetts Institute of Technology, University of Massachusetts Medical School, Emory University, and University of California Davis, which points to ongoing project-based funding rather than one-off awards. The foundation is a regular funder and does not fund individuals or make program-related investments. It also accepts unsolicited research proposals for its research-award program, rather than relying only on traditional funding calls.
Financial Snapshot
Annual Giving
$5.4M
Total Assets
$20.8M
Total Revenue
$8.7M
Total Expenses
$8.2M
Typical Grant Size
Most grants fall between $51K and $275K, with a median of $105K.
25th Percentile
$51K
Median
$105K
75th Percentile
$275K
Geographic Reach
Regional11 states funded
Funding intensity
LowHigh
Headquarters
Leadership
MONICA COENRAADS
Accepts unsolicited proposals
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