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!

Tuesday, May 1, 2012

May Awareness - Focus on Spreading the Word!

Many years ago, I had the privilege to meet children with X and Y chromosomal variations. They were young, some newborns, they were teenagers just diagnosed and they were school age boys and girls who were smart, yet failing in school and frustrated. 

Their parents expressed with great conviction three facts: the kids were smart, yet school was disaster, the kids were confusing, in so many ways, and lastly they needed help...

It has been a journey filled with unbelievable surprises and delights. Through the generosity of the Bucksbaum family, The Focus Foundation was born. Based on the premise that children with X and Y Chromosomal Variations have tremendous strengths and that, indeed, they are atypical learners.

With help anything is possible and with the continued support of many benefactors, The Focus Foundation has grown worldwide. Oktoberfest, sponsored by the Stratts Family, was a tremendous success and has supported several new studies on boys with 47, XXY, 48 XXXY and 49ers. Parents have held birthday parties and in lieu of gifts - given donations. Gifts were small and large, but each one focused on the CHILDREN!

Calls come everyday from all over asking, "our child has just been diagnosed… can you help us?” Or “I have new patient with 49, XXXXY and the family needs your help!” The word is spreading and our goal is moving forward!

Some of the greatest contributors to science, education, industry and entertainment were and are atypical learners including Steve Jobs, Einstein, Edison and Bill Gates, to name a few. Let's not forget Jay Leno, Tom Cruise and Alyssa Milano and Patrick Dempsey. The list of superstars who struggle with learning is long, but they all share their commitment to success.

Our Focus is to optimize each child's development by embracing his or her learning differences, supporting the challenges and infusing every day to focus on success and it will come. 

Focus on what is hard and work harder

Focus on the Goal: independence, extraordinary self esteem and work hard.

Focus and when it gets tough - work even harder

Any and every child with X and Y chromosomal variations, dyslexia or dyspraxia will be successful.  

Focus on spreading the word. Start small - tell one new person everyday this month about The Focus Foundation and the word will spread and more children will be identified and receive treatment. Focus big and gather donations from friends, families and businesses.  

Help us, help them, today!  Focus for 31 days!