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News and Learning

What is FOXG1 Syndrome?

Learning

FOXG1 Syndrome is a rare genetic disorder caused by a mutation of the FOXG1 gene. In some cases, it can be inherited from parents. Otherwise, it occurs due to a "de novo," or spontaneous mutation. It is thought to happen at or just before conception, within a sperm or egg...

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What Parents Need to Know About SUDEP

Learning

Sudden Unexpected Death in Epilepsy (SUDEP) is not well understood, by even the best doctors. However, there are steps you can take to mitigate your child's risk...

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What is a Rare Genetic Disorder?

Learning

A rare genetic disorder is caused by a mutation, or change, in a gene or chromosome. Genetic disorders can therefore be monogenic (single-gene), chromosomal (affecting the chromosome), or complex (multi-factored)...

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What is Rett Syndrome?

Learning

Rett Syndrome is a rare genetic disorder caused by a mutation of the MECP2 gene on the X chromosome, thereby generally affecting girls. It is a neurodevelopmental disorder, meaning it is related to abnormal brain development versus degeneration of the brain over time...

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Soo-Kyung Lee awarded $1.5 million to study FOXG1 at the University of Buffalo

News

Soo-Kyung Lee has been awarded a $1.5 million grant to study FOXG1 Syndrome. The Simons Foundation Autism Research Initiative granted the award to the Lee Lab at the University of Buffalo...

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The Children's Rare Disorders Funds dedicated to finding a cure for FOXG1 Syndrome, and replicating successes across as many rare genetic disorders as possible through funding gene, stem cell and/or drug therapy research. Children with rare disorders are often neurologically and physically disabled. They are often unable to walk, talk, feed themselves, nor do much of what we take for granted every day. Founded by parents of a toddler affected by FOXG1 Syndrome, The CRD Fund is one of the few charities in the world in which 100% of every donation is directed to the cause - in this case, to the development of cures and treatments.