The 401 Project is an initiative formed by families affected by MECP2 Duplication Syndrome to raise funds for the Rett Syndrome Research Trust MECP2 Duplication Syndrome Fund. 100% of funds raised go directly to research projects dedicated to curing this disorder.
MeCP2 duplication syndrome is a condition that occurs almost exclusively in males and is characterized by moderate to severe intellectual disability. Most people with this condition also have weak muscle tone in infancy, feeding difficulties, poor or absent speech, seizures that may not improve with treatment, or muscle stiffness (spasticity). Individuals with MECP2 duplication syndrome have delayed development of motor skills such as sitting and walking. Approximately one third of people with this condition cannot walk without assistance. Many individuals with MECP2 duplication syndrome have recurrent respiratory tract infections. These respiratory infections are a major cause of death in affected individuals, with almost half succumbing by age 25.
But it doesn’t have to be this way……
In 2012, the 401 Project helped to successfully fund the Genetic Reversal experiment in the lab of Dr. Huda Zoghbi as well the Gene Therapy: Vector-Based RNAi project in the lab of Dr. Kevin Foust.
In 2013, the 401 project raised $367,000 in order to kick start the Pharmaceutical Screen project in the Lab of Dr. Huda Zoghbi. This is a four year study and will need to be funded in its entirety.
In addition to these cutting edge experiments, a number of projects are under review and will require funding. All of these are aimed at finding a treatment or cure to end the MECP2 Duplication Syndrome.
To better understand the reversal experiment please visit this site:
The duplication reversal experiment is very similar.
All donations to the Rett Syndrome Research Trust are tax deductible.
Please click here to donate any amount:
Please click here to donate via the Rett Syndrome Research Trust Mecp2 Duplication Fund Website:
If you would like more information on the 401 project or how you can participate, please contact us: