The CdLS Blog
The CdLS Foundation Longtime Volunteer Receives Rare Impact Award from NORD!
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...
Goodbye Lynn
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...
We Lost a Giant
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...
From Trauma to Triumph
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 obstacles including a smaller head, limb differences in his right thigh and hand, a heart defect which required open heart surgery at 4 months and hearing loss.
A Message from Jim Kesting
This past August, Joyce and I took the opportunity to attend the CdLS Family Gathering at Wonderland Camp in beautiful Lake of the Ozarks.
Our Story
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 doctor...
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...
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