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Gov. Proclamation

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Momentum Builds for X & Y Chromosomal Variations Awareness Month

Senator Sam Brownback set to sponsor new Resolution which would bring attention to the prevalence of X &Y Chromosomal Variations

WASHINGTON, D.C. – On May 4, 2010, U.S. Senator Sam Brownback is sponsoring a new Resolution to bring attention to the prevalence of X&Y Chromosomal Variations in children born each day. The Resolution, if enacted, will designate the month of May, every year, as X&Y Chromosomal Variation Awareness Month. Senator Brownback has been a champion of family issues and hopes the Resolution will encourage much needed early diagnosis and intervention for newborns, children and adults. Early detection and increased awareness of neuro-genetic disorders was one of the goals of the Pre-natally and Post-natally Diagnosed Conditions Awareness Act introduced by Senator Edward Kennedy and Senator Sam Brownback in 2005, and reintroduced in 2007. The legislation requires that families who receive a diagnosis of a neuro-genetic disorder be given up-to-date information about the nature of the condition and connection with support services and networks that could offer assistance.

Current research indicates that 1 in 500 births have X &Y Chromosomal Variations. Of those born with this variation, 7 out of 10 children will never be diagnosed and therefore not receive appropriate treatment. For every community in the country, 1 in every 500 people has X & Y Chromosomal Variations. A lack of diagnosis and treatment can leave children struggling with learning disabilities, language impairment, motor planning deficits, reading dysfunction, attention disorders and behavioral problems which can affect them for a life time. Complex medical issues and significant educational issues occur when X and Y Chromosomal Variations are not diagnosed early and treated effectively.

“Although we have the ability to accurately diagnose children and adults to determine if chromosomal variations exist, says Dr. Carole Samango-Sprouse – Executive Director of The Focus Foundation – an organization designed to support children and families dealing with Dyslexia, Dyspraxia and X&Y Chromosomal Variations – most healthcare professionals receive insufficient information about X & Y Chromosomal Variations and may never consider testing for X & Y Chromosomal Variations when they encounter a child who presents with developmental concerns.” X&Y Chromosomal Variations Awareness Month is scheduled to be launched through Sen. Brownback’s Resolution, on May 4, 2010, at the Capital Building, in Washington, D.C., at noon, with numerous state representatives, families and professionals in attendance. “It is our hope that with greater national awareness about the existence of X & Y Chromosomal Variations, children with these disorders can be diagnosed and provided with the syndrome-specific medical care and academic intervention they need,” says Senator Brownback.

For additional information:
Dr. Carole Samango- Sprouse
Executive Director
The Focus Foundation