The Magnifying Glass – A Newsletter
Winter 2016
Volume 7, Issue 3
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.
Science is Moving Fast and Furiously!
The Book is Here! Spread the Word –
To your physician, to your therapists, and to other families
X and Y Chromosomal Variations
Hormones, Brain Development, and
Neurodevelopmental Performance
Dr. Carole Samango-Sprouse and Dr. Andrea Gropman have published a book presenting the latest in research and clinical care addressing the interaction between hormones, brain development, and neurodevelopmental progression in children with X and Y chromosomal variations.
This book has been stocked in more than 75 medical schools across the country!
Please contact carrie.ndc@gmail.com or go to http://dx.doi.org/10.4199/C00134ED1V01Y201506DBR013 to get your copy today!
New Publications
As a part of our mission to bring innovative research and treatment to those with X & Y chromosomal disorders, we continue to pursue various research projects that will help the scientific community have a better understanding of these conditions. We have several case reports that we are preparing to submit, which will present unique medical cases and promote positive, impactful discussion within the medical community. Additionally, we have recently submitted a “Special Topics” article to the Prenatal Diagnosis journal that analyzes the current state of using Non-Invasive Prenatal Testing (NIPT) to screen for 47, XXY, as well as possible benefits and limitations for future expansion of this technology. We also have exciting ongoing research collaborations with Dr. Joseph Bressler at Johns Hopkins University and Dr. David Page at MIT, who is a renowned specialist in X and Y chromosome disorders. Both collaborative studies seek to better understand the biology of the X and Y chromosomes and how abnormalities at the molecular level can have a clinical impact on individuals. Looking ahead, we are aiming to have articles describing boys with 48, XXXY and behavioral manifestations in boys with 49, XXXXY published early in 2017.
New Year, New Look, New Website
Because awareness and education are such key aspects of our mission, our website is an essential part of the long-term success of The Focus Foundation. We are working with web designers to create a platform that is both user-friendly and comprehensive on the topics of X and Y chromosome disorders and developmental dyslexia and dyspraxia. Our new and improved website will be ready by the first week in January, so be sure to check for a new look at www.thefocusfoundation.org in the near future! Likewise, we are also putting resources towards increasing our social media presence. Our Facebook page has provided a network for parents and other supporters to connect and stay updated on everything going on at The Focus Foundation. We have now expanded upon this by creating a Twitter account to reach even more people interested in our research and events. If you don’t already follow us on Facebook and/or Twitter, here is how to find us:
Conference Announcements
Topics will include:
Sessions for Parents of children ages 0-5
The Where, When, and Why of Testosterone
Academic Red Flags at Preschool
Panel of Adolescent Boys and Parent Panel
Linking Baby Behaviors to Academic Success–Advocacy for best IEP–Social Learning
Children with an X or Y Chromosome Variation:
San Francisco: January 28th, 2017
Annapolis: June 24th and 25th, 2017
49 ers Conferences:
December 1-5 2016: Thornton Manor, Liverpool, England
April 27-30, 2017: Bari, Italy (exact location TBD)
July 19-21, 2017: Annapolis (14th annual 49ers conference)
Learn from the Experts
Dr. Andrea Gropman (neurologist, Children’s National)
Dr. Darius Paduch (pediatric endocrinologist, Cornell)
Dr. Carole Samango-Sprouse (neurodevelopmentalist, GWU)
Dr. Bressler (research scientist, Johns Hopkins)
Michelle Garcia Winner (Speech Language Pathologist)
Dr. Francine Mitchell (Physical Therapy)
and Many More…
DeXY’s Corner
A Special Note
Dr. Carole,
I want to thank you so much for being part of my life. You may not realize it, but I draw strength from your spirit, I work harder because you believe in me.
I hope you know that you make a positive difference in the world; I want you to know that your gift is to make others play larger and better and more passionately….that’s how change is made.
Your ability to inspire people daily in both small and large ways makes a difference. You’ve made huge difference in my family’s journey for the last 15 years.
I expect you will have an incredible 2017.
Warm regards,
Recipe
GIFT GUIDE
Things to Remember While You Shop
If you are using Amazon, remember to use Amazon Smile and select The Focus Foundation as your charity.
Playing is learning. Choose items that bring both to the table.
DECEMBER IS BOOKS ACROSS AMERICA MONTH
This Is NOT A Picture Book by Sergio Ruzzier- In this quirky yet sweet picture book about the joy and power of reading, Duck learns that even books without pictures can be fun. Ages 3-5
They All Saw A Cat In this glorious celebration of observation, curiosity, and imagination, Brendan Wenzel shows us the many lives of one cat, and how perspective shapes what we see. When you see a cat, what do you see? Age 3 – 5, Grade P-K
In The Thank You Book! By Mo Willems, Piggie wants to thank EVERYONE. But Gerald is worried Piggie will forget someone . . . someone important. Age 4 – 8, Grades 1 – 3
Now a motion picture, Fantastic Beasts, takes place before Harry Potter is born. When Magizoologist Newt Scamander arrives in New York, he intends his stay to be just a brief stopover. However, when his magical case is misplaced and some of Newt’s fantastic beasts escape, it spells trouble for everyone… Ages 8-12, Grades 3 and up
Echo is by Pam Munoz Ryan and has won the Newbery Award. Lost and alone in a forbidden forest, Otto meets three mysterious sisters and suddenly finds himself entwined in a puzzling quest involving a prophecy, a promise, and a harmonica. Ages 10-12, grades 4-7
Double Down is #11 in the Wimpy Kid series. The pressure’s really piling up on Greg Heffley. The only thing he’s good at is playing video games, but his mother wants him to broaden his horizons by doing something—anything!—else. Ages 8-12, Grades 3-7
FOCUS on Strength, Agility, and Flexibility
Idea for a perfect theme gift pack: Jump Rope!
Some of the simplest old-school games are perfect for improving agility in children. Hopscotch, duck-duck-goose, jumping rope and Simon Says will all help children with agility, balance and coordination — the ABCs of kid fitness. Let kids make up their own games that involve running, jumping or hopping or following a series of physical instructions. You may be surprised by how creative they get.
Rhymes
Down by the river, down by the sea,
Johnny broke a bottle and blamed it on me.
I told ma, ma told pa,
Johnny got a spanking so ha ha ha.
How many spankings did Johnny get?
1, 2, 3….
Keep counting until the jumper messes up.
Gypsy, Gypsy please tell me
What my fortune’s going to be
Rich-man, Poor-man, Beggar-man, Thief.
Doc-tor, Law-yer, In-di-an Chief.
Tink-er, Tail-or, Cow-boy, Sail-or.
Continue repeating until jumper misses and that is who you will marry.
Sites: https://www.jumpropeinstitute.com/kids.htm http://www.gameskidsplay.net/jump_rope_ryhmes/index.htm
An App from Sworkit Kids by Nexercise available on iTunes and Google Play
Turn Fitness into a game with your children with customizable workouts for Strength, Agility, and Flexibility! No matter where you are, every moment is an opportunity to get active and have fun getting fit. Ages 7 – 14
Books – Guinness World Record holder David Fisher is going to change the way you think about rope jumping. Cool Jump-Rope Tricks You Can Do! will teach you over 100 cool skills and tricks like the Houdini, Cat’s Cradle, and the Pretzel. Even if you have never picked up a rope before,
For Jump Rope Rhymes, try Anna Banana: 101 Jump Rope Rhymes by Joanna Cole and Alan Tiegreen
Miss Mary Mack and other Children’s Street Rhymes by Joanna Cole and Stephanie Calmenson
Don’t forget to wrap it all up with a Jump Rope!
Volunteers Needed
If you have any success stories to share (great or small), please email them to Teresa along with any photos: teresa@thefocusfoundation.org
The Black and White Casino Night in San Francisco (1/28/2017) is looking for volunteers. It will take place at The Great Highway in San Carlos, California. Activities will include gaming tables and a silent auction.
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. Many thanks to the families employed at the companies below who have doubled their donations through community partnership programs!
