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 Francesca Scognamiglio | Feb 18, 2020 | In Memoriam
Grace was a beautiful, vibrant soul who filled our lives with sunshine. She pushed through many difficulties and remained happy and positive. When she lost her ability to walk she found a way to dance in her walker and find joy in new discoveries. She loved school and...
by Francesca Scognamiglio | Feb 18, 2020 | In Memoriam
Natalie was born a fighter, and that she did for 15 yrs 2 days. She spent more time in the hospital than out, but always had a smile on her face. When you know no different being sick is normal. I will forever miss her sweet smile and infectious giggle. A true Angel...
by Francesca Scognamiglio | Feb 18, 2020 | In Memoriam
Nicholas was with us five short years. He brought us much joy in the midst of many tears. Having Nicky made us the people we are today! Through all the long days we learned to find laughter in even the little things. Every day we would say “Nickys going to walk,...
by Francesca Scognamiglio | Feb 14, 2020 | In Memoriam
Angela Jeannette Shaw was born on October 20, 1973. She weighed 4 lbs. 2 oz. At age, 1, she weighed 8 lbs. At her death, age 5, she weighed 15lbs. She was a joy and inspiration and profoundly influenced our lives by her presence. Her brother Hudson, who loved her...
Recent Comments