Monday, May 7, 2012

May Awareness Then and Now...


As we move through this May Awareness month, we are still grateful to Senator Brownback, who in 2010 helped The Focus Foundation declare May as the national awareness month for X & Y Chromosomal Variations. In accordance with Senator Brownback, “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."

Two years later we still strive to expand our visibility and bring attention to the prevalence of X & Y Chromosomal Variations in children born each day and to encourage much needed early diagnosis and intervention for newborns, children and adults. This year we have submitted proclamation requests in over 40 states, continuing on the mission started in 2010. We are working extremely hard in a variety of other facets to ensure that every child has the chance at a proper diagnosis and appropriate education. Here are just a few things The Focus Foundation is doing to spread the word this year.

Dr. Sprouse, Melissa Bilash, Members of Mom Congress and Senator Casey's Aide
Tuesday, May 1st, The Focus Foundation, Melissa Bilash, and members of Mom Congress were lucky enough to travel to the Senate to share the term “educationally relevant” with Senator Casey (PA) and Senator Harkin (IA). The term refers to a criteria that schools use to determine whether or not a child needs a related service to access their education, and schools often use this term to discontinue or downgrade services available to children because they are not seen as "educationally relevant" but rather "medically relevant" and thus not an educational necessity. This line between what is educationally relevant and what is medically relevant often allows for necessary services to be denied and thus forcing parents to pay out of pocket, or forgo treatments and services completely.

It is imperative that congress defines what is "educationally relevant" so school systems have the proper definition of educationally relevant to offer services that children need and deserve. Since, congress is in the process of reauthorizing the Elementary and Secondary Education Act, it is time to bring awareness to the problems surrounding the vagueness of "educationally relevant" and craft a definition that will allow every child to progress appropriately, to meet their various needs that interfere with their ability to learn, succeed in school and prepare them for life and adulthood.

At the Focus Foundation, we are working at the national level to develop IEPs that are targeted, syndrome specific and that recognize the link between brain and behavior, in order to maximize the growth of each and every child towards reaching their full potential. As well as, combining forces with Mom Congress, Parenting Magazine's all parent advocate group focused on positive change in the education system, to increase visibility for all our disorders and make sure all children are receiving the best education possible.

May Awareness 2012 is off and running, we have already seen an influx of newly diagnosed patients  from all over the world with 47, and 48 and 49 finding us and looking for more information! Let's continue to do the good work and make sure many more children are diagnosed this May so proper care and treatments can be given to ensure bright futures for all!

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