The 401 Project was established in 2012 to raise funds to cure MECP2 Duplication Syndrome

Given the experience with models of Rett syndrome we believe the odds are excellent that several symptoms of the duplication will be reversed.”
— Dr. Huda Zoghbi Feb 2013

Our Mission

To cure MECP2 Duplication Syndrome.

Our Name

In 2012, a concerted parent-driven effort was established to raise funds for the initial MECP2 reversal experiments conducted at the Baylor College of Medicine. Each MECP2 family pledged to raise $401.00 in funds to cover the research program cost. The initiative was a success, and the 401 Project was born. We've maintained the 401 Project name as it is fundamental to our philosophy: the collection of individual efforts produces high impact results.

Our structure

The 401 Project was established by parents of children affected by MECP2 Duplication Syndrome. Today, the 401 Project is maintained by a group of parent facilitators who guide fundraising programs, scientist interactions, research finding translations, and social media activities. There are very minimal direct costs associated with running the 401 Project, and these costs are covered by the parent facilitators. Every penny donated to the 401 Project goes to research.

Our Relationship with the Rett syndrome Research Trust

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.

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.



What We've Achieved

  • In 2012, the 401 Project went from approximately $5,000 to over $270,000 in its first year.
  • In 2012, the 401 Project fully funded the Genetic Reversal Project in the lab of Dr. Huda Zoghbi.
  • In 2012, the 401 Project fully funded the Gene Therapy: Vector-Based RNAi project in the lab of Dr. Kevin Foust.
  • In 2013, the 401 Project fully funded the Pharmaceutic Screen project in the lab of Dr. Huda Zoghbi.
  • In 2013, in partnership with the Blake McMillan Trust and the Van Wright Foundation, the 401 Project helped fully fund the MECP2 Duplication Syndrome Database project carried out by Dr. Helen Leonard.