The Magnifying Glass – A Newsletter Fall 2013 Volume 3, Issue 1

The Magnifying Glass – A Newsletter Fall 2013 Volume 3, Issue 1

The Magnifying Glass – A Newsletter
Fall 2013
Volume 3, Issue 1

Dear Focus Foundation Friends and Families,

As school gears up and fall approaches The Focus Foundation would like to wish everyone a happy start to the school year! While homework and IEP meetings consume our time, remember to take a deep breath and check out DeXY’s corner for some helpful Math games, books and apps that might make life a little easier for the student in your family.

We’d also like to take a moment to reminisce on this past summer and spring. Our accomplishments for the year are already far beyond what we imagined! We have seen over 1,000 boys and girls with X and Y Chromosomal Variations in the last decade and hundreds of children with dyspraxia and dyslexia. So much to write about!

Following the groundbreaking publication of the American Journal of Medical Genetics Part C, we have received an onslaught of calls from all over the world including Europe, Asia and South America. The Focus Foundation has made significant progress in working towards a better life for children around the world! As we build international awareness we will improve medical and neurodevelopmental care for children everywhere. We have ancillary health care personnel helping us find our children who are hiding in plain sight. it is both exciting and encouraging!

Through your support, we now have had our 10th annual 49ers conference. We now have 1 specialties participating including neurology/genetics, dental, endocrinology, orthopedic, and vestibular physical therapist, and immunology.. We are in the process of developing treatment modules, for our 49ers, with tutorials to address upper extremity deficits and improve shoulder girdle function. Please stay tuned as we develop treatment modules for our boys and girls with 47, XXY, XYY and XXX.

We have also started the task of documenting the benefits of hormonal treatment in our boys with XXY given at 12 months and again between 6 and 9 years and again at 11 years. So that perhaps the statement, “your son with XXY does not need testosterone until he is a teenager,” will never be heard again.

Our efforts will continue this fall with upcoming events like our 3rd annual Oktoberfest fundraiser – when we started this event in 2011 we never dreamed it would get this big! Our Greater Philadelphia Fundraising Committee has become a critical part of our fundraising team and their efforts shine through this incredible event. So please join us this year at the Crystal Tea Room in Philadelphia on October 17th. The Oktoberfest is one of the many magical events that has guaranteed our exponential progress in the last seven years.

If you can’t be there in person, there are always other ways to help. Just a few of the other items on our list you can contribute towards include: curriculums for school resources, brochures for health professionals, a Center of Excellence, and a documentary for newly diagnosed parents and children.

Our accomplishments are the shared endeavors of all our fabulous supporters. We are grateful for all you do, which allows us to do so much! As I close this letter, i would like to brag about our boys and girls and their accomplishments. Some of our older boys and are currently in college and we have children now participating in sports such as basketball, soccer, water polo and state level ski teams. We’ve also been told that one of our Triple X girls aspires to be a famous fashion designer and actively dreams of being the next Vera Wang!

My wish is that every family will want to brag about their child and how well he or she is doing, so medical personnel will understand that children with X and Y Chromosomal Variations, dyspraxia and/or dyslexia bring profound gifts to our world, especially when identified early, provided with targeted and timely treatment, as well as when surrounded by a nurturing and supportive environment. Enjoy the fall weather!

Sincerely,

Dr. Carole

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