by Gabbie Nadeau | Mar 16, 2020 | Uncategorized
Dear Members of the CdLS Community: In light of the growing public health concern around COVID-19 and the global potential for public transmission, we have a responsibility to the CdLS community to minimize the risk associated with spreading the virus. As a result,...
by Gabbie Nadeau | Feb 28, 2020 | Research News
Philadelphia, February 26, 2020 – The Roberts Individualized Medical Genetics Center (RIMGC) at Children’s Hospital of Philadelphia (CHOP) launched in 2014 as a first-of-its-kind system to help families navigate the complex process of genetic and genomic...
by Gabbie Nadeau | Feb 24, 2020 | Media Room, Uncategorized
Norm Winnerman, retired Danbury High School teacher and Athletic Director, and valued member of the Cornelia de Lange Syndrome (CdLS) Foundation will be receiving the Rare Impact Award. The National Organization for Rare Disorders (NORD) will be honoring all...
by Gabbie Nadeau | Oct 31, 2019 | Uncategorized
After 23 years of dedicated service, Lynn will hang up her CdLS cape and walk off into the sunset. Lynn’s retirement is bittersweet for those of us who have had the pleasure of working with her. She can always be counted on to for her dedication to the families, her...
by Gabbie Nadeau | Oct 21, 2019 | Uncategorized
Recently, we learned the sad news that LAIRD JACKSON – the CdLS Foundation’s first medical director passed away. Before the founding of our beloved Foundation there was the Reaching Out newsletter. Those early pioneers sent out a request to the medical community...
by Gabbie Nadeau | Oct 4, 2019 | Uncategorized
Marckis Mountz is the youngest of seven children, all raised by loving parents Jana and Ken. Marckis grew in his mom’s heart and not her belly. Marckis was born at 37 weeks weighing 2 pound 2 ounces and only 14 inches long. Being so small Marckis had to overcome many...
by Gabbie Nadeau | Oct 1, 2019 | Uncategorized
Wonderland Camp has a sign stating, Serving Special needs since 1969. The event was hosted by the Rauba family, whose daughter Janelle (11) has CdLS. Janelle’s dad, who loves to barbecue, served hamburgers and hot dogs for lunch. Other family members, including,...
by Gabbie Nadeau | Sep 18, 2019 | Uncategorized
I was 21 weeks pregnant. “Hi, Molly. This is Dr. F. calling about your blood work.” My heart started racing. I knew the doctor wouldn’t call unless he was concerned. I ran to the bathroom of the restaurant we were in – the only place I could think to go. My...
by Gabbie Nadeau | Sep 6, 2019 | Media Room, Uncategorized
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...
by Gabbie Nadeau | Sep 4, 2019 | Media Room, Uncategorized
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...
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