The Magnifying Glass – A Newsletter
May 2018
Featuring:
X and Y Chromosomal Variations Awareness Month
A Note From Dr. Sprouse
New Publications
Receiving Honors
Our Newest Study
Facebook Live
Conference Announcements – 15th Annual 49er Clinic and UKConference
DeXY’s Corner: Cinco De Mayo, Happy Mother’s Day and Books We Love
Help Wanted
How To Get Involved
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.
A Note From Dr. Sprouse
Dear Friends and Family,
Happy X & Y Chromosomal Variations Awareness Month! This is such a special time for The Focus Foundation as science, patient care, and awareness are all at the heart of our mission.
Did you know that over 75% of the children who have a chromosome variation will go undiagnosed in their lifetime? Currently, only 25% will receive the proper testing and diagnosis. Imagine. It only takes a simple cheek swab to confirm diagnosis yet some will never receive a diagnosis and most will be misdiagnosed or misled, lacking the ability to properly treat and intervene and allow that child to soar in his or her own future. As a specialist – and a parent – I know we can do better.
We love our community here at The Focus Foundation. Our parents are advocates for their children and together we are creating ripples of change and support for one another’s journey. And this month, we are calling you to action:
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- To help change those statistics.
- To debunk myths and grossly inaccurate expectations for our children.
- To stand up for education and better care.
- To help spread the word that there IS hope and there IS treatment.
You can join us in our Awareness journey this month in several ways.
- Follow us on Facebook and Twitter for tips, tricks, and inspiration daily! Share those tips and tricks with people who you think will find it helpful.
- Show your support for Chromosomal Variations Awareness by featuring one of our custom profile borders on your Facebook picture! Search “The Focus Foundation” in your Facebook profile editor to choose from 3 custom templates! Encourage families members to do the same.
- Volunteer for or begin a fundraiser in your community to support research and further testing for all chromosomal variations including 47, XXY, 47, XYY, 47, XXX, 48, XXXY, 48, XXYY, and 49, XXXXY.
- Advocate for donations – personal or corporate – to help continue the mission of research and treatment within The Focus Foundation.
I am always moved by your dedication to The Focus Foundation and happy and proud to have you and your children along on our journey. We wish you May flowers, a happy and healthy spring, and of course, an informative and impactful X and Y Chromosomal Variations Awareness Month.
Sincerely,
Dr. Carole Samango Sprouse
