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Maria Webster is six years old and has a rare enzyme deficiency called ALG9 deficiency; also known as congenital disorder of glycosylation 1L (CDG-1L) or ALG9-CDG. She struggles with severe physical and cognitive delays and frequent seizures. She is content and beautiful, though is unable to walk and has very limited ability to communicate. There is currently no treatment for her condition. In February 2011, Foundation Glycosylation (the FoG) was established by Maria's family to raise funds in order to support research for therapies targeting CDG. Read more about Foundation Glycosylation...
Congenital Disorders of Glycosylation (CDG) compose a rare group of genetic disorders that result in faulty glycosylation. Glycosylation is the cellular process of adding sugar chains to proteins. The glycoproteins produced by this multi-step enzymatic glycosylation pathway are necessary for the normal growth and function of cells, tissues and organs. Read more...
The FoG was established in order to support research for the development of therapies targeting CDG, to help raise awareness of the disorder and to advocate for individuals living with this enzyme deficiency.