The CdLS Blog
Avon nonprofit moves to larger office space in town
By Sean Teehan The Avon-based Cornelia de Lange Syndrome (CdLS) Foundation has moved its headquarters to a larger office in town to facilitate growth, it said. The CdLS Foundation has 10 employees and provides services -- including running support groups and four...
An Open Letter to the New England Patriots
Dear Ms. Spigarolo, Mr. Kraft and the New England Patriots Team: I want to extend a sincere thank you, on behalf of all families with children with special needs, for providing access to enjoy your training camp. This year was even more important and special for our...
Hello from CdLS Germany!
TO MY AMERICAN FRIENDS: I had the pleasure of representing us at the CdLS International Conference last weekend in Europe. It was a bittersweet experience to say goodbye to our friends around the world who are part of our CdLS Family. It was thrilling to see families...
SickKids scientist calls for ‘national strategy’ to get genome sequencing covered in Canada
The U.K. will pay for children with mysterious rare disorders and their parents to have their entire genomes sequenced — Canadian scientists want the same The U.K. is rolling out a program in which all seriously ill children without a diagnosis will be able to get...
Researchers describe new functions of protein that play key role in some tumors and rare diseases
by The Spanish National Cancer Research Centre Two mouse embryonic stem cells in which two Polycomb regions from different chromosomes (HoxC, green; HoxD, red) appear next to each other (arrows). Cohesin-SA2 promotes this type of contacts between distant Polycomb...
Lawmakers Look To Jump-Start Employment For Transition-Age Youth
by Shaun Heasley | June 12, 2019 With a bipartisan proposal, members of Congress are pushing a new plan to increase competitive, integrated employment for young people with developmental disabilities. A bill introduced in the U.S. House of Representatives this month...
Small, but mighty: Child handles rare syndrome head-on
LEWISTOWN — Marckis Mountz is a sweet and bubbly 4, soon to be 5-year-old little boy whose smile lights up the room. He lives in Lewistown with his parents, Jana and Ken Mountz. He is the youngest of seven children; two remain at home with him and four are adults. He...
How on-campus retail jobs help students with disabilities
Deep within a labyrinth of offices at Wright Junior High School, eighth-grader Mikayla Needlman gently knocks on Lincolnshire-Prairie View School District 103 Superintendent Scott Warren's door. Warren quickly opens up and smiles at his young visitor. Mikayla is one...
Caring for Luke: Portsmouth family raises CdLS awareness
By Karen Dandurant news@seacoastonline.com PORTSMOUTH -- May 11 is awareness day for Cornelia de Lange syndrome, a rare genetic disorder. The Lyons family of Portsmouth knows all about it. Their son Luke, now 11, was born with CdLS, which has variations from mild to...
New Blood Test May Help Diagnose Prader-Willi Syndrome, Other Complex Disorders
A new blood test called EpiSign may help identify complex and hard-to-diagnose genomic imprinting disorders such as Prader-Willi syndrome (PWS). EpiSign, available in two versions, can diagnose 19 complex disorders. This newly available diagnostic tool, which...
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