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Giving a voice to the voiceless

 

Evelyn's Voice is a movement to raise awareness and find a cure for Rett Syndrome.  Rett Syndrome is an extremely rare genetic disorder that causes girls to lose their ability to use their hands, legs and speech.    We want to be the voice for the many girls who are living with Rett Syndrome. 

Our daughter, Evelyn, was recently diagnosed with Rett Syndrome.  Through Evelyn's Voice, we not only hope to use Evelyn's story to change people's lives, but to make a significant impact in finding a cure.  We are on a mission and we hope that you will join us on this journey.

 

Evelyn's Story

Our Mission

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What's Rett? 

Rett Syndrome is a genetic neurological disorder that occurs almost exclusively in girls.  After birth, girls with Rett syndrome have 6 to 18 months of apparently normal development before experiencing severe, rapid degeneration resulting in problems with language and communication, learning, coordination, eating and other brain functions. Girls can ultimately lose the use of their hands, walking ability and speech.  Other signs and symptoms that can develop include breathing abnormalities, seizures, scoliosis, and sleep disturbances. 

 

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Alexandria, VA