Australian R’ee Wassenberg released this video tonight in support for the Project 401 effort to raise funds for research on MECP2 Duplication Syndrome
The 401 Project is a parent initiative to help raise the much needed money for a reversal experiment for MECP2 duplication (a rare genetic syndrome) that we hope will one day lead to a cure for our children and children in the future.
To donate to The 401 Project please go to: http://www.401project.com/
Mecp2 duplication (and also MECP2 triplication) syndrome is a condition that in children (predominately 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. 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 about half succumbing by age 25.
But it doesn’t have to be this way……
The 401 Project was organized by families of children and adults with MECP2 Duplication Syndrome to raise money for critical reearch. One hundred percent of these funds will go towards a potentially life changing experiment ready to begin at the Baylor College of Medicine headed by Huda Zoghbi. With funding in place, the experiment aims to REVERSE this syndrome in a mouse model.
For more information about the reversal please read:
For more information about Mecp2 duplication/triplication, please read: