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The Focus Foundation

February 2018

The Magnifying Glass: A Newsletter

Our Promise: For all families, The Focus Foundation promises to develop the latest and most innovative care. The Focus Foundation believes in novel and "out of the box" thinking that produces scientific breakthroughs that enable children with neurogenetic disorders to lead better and more fruitful lives.

Welcome New Board Members

 

We welcome Jacolyn Bucksbaum, BA, as a Board Member. She’s been passionate about The Focus Foundation since its start in 2005 as a co-founder. She is described as a fearless philanthropist with extensive experience with nonprofit foundations and has served on numerous boards, spearheading projects that shine a spotlight on the U.S. Ski Team, The Ounce of Prevention Fund and the Art Institute of Chicago. Her family foundation, focuses on early childhood development, Jewish education, the arts and civic organizations in Aspen and Chicago.

We also welcome George Stratts, BBA, as a Board Member. He is currently President and CEO of Lexington Insurance Company, a member AIG. George and his wife, Melissa have been the underwriters of Oktoberfest in Philadelphia for 7 years, committed to supporting The Focus Foundation’s mission to identify and help children with X & Y Chromosomal Variations, Dyslexia and/or Developmental Dyspraxia: “Because every child deserves the chance to succeed.” Many families are touched by chromosomal variations.

Science is Moving Fast and Furiously!

 

New Publications

 

The Focus Foundation is happy to announce its first publication of the 2018 year! An original article titled International Investigation of Neurocognitive and Behavioral Phenotype in 47,XXY (Klinefelter syndrome): Predicting Individual Differences has been accepted for publication in the American Journal of Medical Genetics, Part A. An international collaboration that spans across two countries: the United States and the Netherlands, this study provides additional support that prenatal diagnosis and receiving testosterone treatment influence brain function and neurodevelopment in a positive manner. We are happy to share this article with all who are interested once it has been formally published!


The research efforts of The Focus Foundation were recently recognized as Dr. Sprouse along with the renowned Dr. Graham, Dr. Debra Counts our own pediatric endocrinologist, and Dr. Jeannie Visootsak were asked to take the lead on updating the 47,XXY (Klinefelter syndrome) chapter of Management of Genetic Syndromes, a comprehensive guide on the care of common genetic syndromes. Eight years have passed since its last update, and a great deal of research has been completed since! The chapter now includes the most up-to-date research on the immunological, musculoskeletal, behavioral, and endocrinological aspects of not only 47,XXY, but also 48,XXYY, 48,XXXY, and 49,XXXXY. With the help of this chapter, we hope to further to educate health care providers in the care and management of these children, and to provide families with the information they need.

Receiving Honors             

 

Together with our colleague, Dr. Andrea Gropman, The Focus Foundation is spreading the word and our research about 49,XXXXY to the American Academy of Neurology (AAN) 70th Annual Meeting! AAN represents over 30,000 neurologists dedicated to improving patient care and we are excited about the accepted presentation, “49,XXXXY, a Rare Genetic Disorder: The Relationship with Autism Spectrum Disorders (ASD), Developmental Delay, and Testosterone.” Look out for pictures and news from the event in April!

The Focus Foundation is paving the way for research on X&Y chromosomal variations at this year’s Annual Clinical Genetics Meeting in Charlotte, North Carolina with 2 posters, one ribbon for a highly ranked abstract, and a scientific concurrent session! Dr. Sprouse, with five of The Focus Foundation’s esteemed colleagues, will be enlightening fellow researchers, geneticists, and clinicians with their scientific concurrent session: “Update on Advances and Dispelling myths about Sex Chromosome Disorders (SCD).” Keep a look out for updates and pictures in April!

Facebook Live

With over 1,600 views, and over 50 ‘likes’ and ‘loves,’ Dr. Sprouse hit the web in January, Facebook to be exact, to spread some facts and tips about X&Y Chromosome Disorders. Check it out on The Focus Foundation Facebook page to learn more about X&Y disorders and the impact of Childhood Apraxia of Speech, behavioral problems, school systems, and the implementation of Testosterone.

Join us for the next Facebook Live! at noon on April 4th - Nuances of Developmental Dyspraxia: Treatment and Identification

Next Facebook Live - April 4, 2018

Follow Us On Facebook

Upcoming Events

15th Annual 49ers Clinic
Annapolis, Maryland
July 18th – 20th, 2018


Can you believe the Annual 49ers Clinic is celebrating our 15th year? Registration opens to all 49ers across the globe this spring

UK Conference
December 1st - 3rd, 2018

We are happy to return to the UK!

The Focus Foundation will require a minimum of 10 families to register for this annual conference in order to make the jump across the pond. Help us spread the word! Registration will open in July.

View Online Calendar

DeXY's Corner

February is Dental Health Month

Being a dentist is a wonderful career choice. It means you want to help people be mouth healthy and make a difference in their health and well-being. Most people think being a dentist means putting your fingers in people’s mouths and looking for cavities, but there’s a lot more to it than that. Dentists work in lots of places outside the dental office, including hospitals, laboratories, the military, and schools—where they teach future dentists like you!

Here are some other great reasons to be dentist:

  • You get to help people be healthy and feel better.

  • Every day, you get to improve people’s smiles. 

  • Dentists are leaders. 

  • Science is cool. So is art. Dentists get to do both.

  • You get to be your own boss and own your own business.


Check out our list of kid books about visiting the dentist AND some great tips for our tween and teen readers!!

Read More - Dental Health Month Blog Post

Take Time To Ryhme!

Did you know that something as fun as rhyming is an important step on the path to reading? This simple play with words is an important stage in pre-literacy. Not only does it help children to develop phonological awareness, but it also helps to increase one's memory and knowledge of sight words. Rhyming is highly associated with later reading function so make sure to find some time to rhyme!

Who better to read with rhymes than Dr. Seuss?
Read Across America! Dr. Seuss Day is March 2!
Alex Rodriguez (A-Rod) picked Horton Hears a Who!
Read More - Time to Rhyme Blog Post
COMP image- fine motor skills

Fine Motor Skills

Most often associated with the small muscles in the fingers, hands, and forearms. However, the development of other parts of the body, such as the upper extremities, can also play a role in fostering good coordination and accuracy. Building upper body strength is not only critical to good body posture but is also critical to all aspects of academics. Deficits in shoulder strength, stability, and trunk control can affect fine motor function, such as limiting handwriting capabilities. Because the brain is single-minded, if it is focused on thinking about how to form letters when writing, then it will not be able to focus on the content. Thus, the child’s learning will be compromised. To help prevent this, building upper body strength and practicing handwriting are both recommended.
 

Games, toys and activities that improve fine motor skills:

  • Stacking toys and blocks are great for developing fine motor skills in babies and toddlers.

  • From Learning Resources (available at Amazon) is a Helping Hands Fine Motor Tool Set. Ideal for ages over 3, it includes grabber tweezers, scoopers, droppers and squeezy tweezers.

  • Use safety scissors and paper to practice cutting. Don’t forget lacing cards and block puzzles for practicing fine motor.
Read More - February Fine Motor Skills Blog Post

Apps for Kids

We have put together a list of apps for kids that enhance your children's emerging skills and that they will absolutely adore.
  • Dora’s Rhyming Word Adventure focuses on your child’s emerging literacy skills. By matching rhyming words , your child will become aware of individual sounds (phonemes) in words and how they are sequenced and changed to make new words.

  • Practice rhyming using Dr. Seuss apps found at ombook.com.

  • Recognition of rhyming words is one of the first ways that a child demonstrates phonological awareness. In the Auditory Rhyming(AR) app the child must identify which word out of a field of three does not rhyme.

  • Use Word Grab Phonetics to blend sounds, build words, and create sets of rhyming words.

Read More - February Apps for Kids Blog Post

Help Wanted


We want to celebrate the accomplishments of our children. Has anyone participated in Special Olympics? With the Winter Games, we thought it would be fun to celebrate our Special Olympians! If you have any success stories to share (great or small) please email them along with any photos. Names will not be shared. Please email: cbedard@thefocusfoundation.org

Contributions

You can give more without spending more. Many companies will match your donation to The Focus Foundation. Check with your personnel or human resources office to see if your company participates in a matching program.
THANKS to all who are helping support the mission of The Focus Foundation through your continued support spreading awareness and through your varied contributions. Your efforts are helping ensure a brighter future for all of our children.

Visit thefocusfoundation.org or click the button below to donate.
Donate Online Today
We welcome suggestions and comments for future newsletter or Facebook content. Email dexy@thefocusfoundation.org
 
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