All funds raised through the 401 Project initiative are directly deposited into the Rett Syndrome Research Trust MECP2 Duplication Syndrome Fund. The Rett Syndrome Research Trust (RSRT) is a registered non-profit organization, and all donations are fully tax deductible. RSRT's tax ID number is 26-0687439.
MECP2 Duplication Syndrome was discovered in 2005 by Dr. Huda Zoghbi during the course of her research on Rett Syndrome. Both Rett Syndrome and MECP2 Duplication Syndrome are caused by mutations in the MECP2 gene. Rett Syndrome-affected individuals do not produce enough MECP2 protein in their brains while MECP2 Duplication-affected individuals produce far too much MECP2 protein. Research conducted on the earlier-discovered Rett Syndrome was easily leveraged to initiate promising research to cure MECP2 Duplication Syndrome.
RSRT was founded in 2008 by Monica Coenraads. Since 1999, Monica has led the surge in research for genetic disorders caused by mutations in the MECP2 gene. The MECP2 Duplication community is beyond fortunate that Monica has championed MECP2 Duplication Syndrome research under the RSRT umbrella. Under Monica's leadership, over $40,000,000 has been raised for research on MECP2-associated genetic disorders. RSRT operates by constantly engaging academic scientists, clinicians, industry, investors, and affected families. These relationships catalyze the development and execution of a research agenda that neither academia nor industry could achieve alone. RSRT identifies, solicits, evaluates, prioritizes, funds and monitors ambitious research projects that have the greatest likelihood of impacting the lives of those afflicted with Rett Syndrome and MECP2 Duplication Syndrome.