by Gabbie Nadeau | Oct 31, 2018 | In Memoriam
Natalie was a joyful and radiant child. When she was born, her doctors did not anticipate her living long. She defied this prognosis, and lived five very vibrant years with her loving family. Born to Jane and Arsalan, Natalie was the 5th of 9 children in the Nikzad...
by Gabbie Nadeau | Oct 19, 2018 | Research News
Here is an interesting article on rare disease patients and families, written by By Peter L. Saltonstall, President and CEO of National Organization for Rare Disorders (NORD) about developments around the FDA Safety and Innovation Act. Here is a short excerpt for a...
by Gabbie Nadeau | Oct 19, 2018 | Research News
Dr. Olaf Bodamer wasn’t sure what was wrong with the 3-year-old boy he recently examined at Boston Children’s Hospital, but he had a hunch. The child’s muscle tone was weak, and he had taken longer than expected to start walking and talking. He also had unusual facial...
by Gabbie Nadeau | Oct 19, 2018 | Research News
The Cerebra Centre for Neurodevelopmental Disorders is organized through the School of Psychology at the University of Birmingham. Their work focuses on difficulties experienced by children and adults who have intellectual disabilities, autism spectrum disorders and...
by Gabbie Nadeau | Oct 17, 2018 | Uncategorized
On Friday, February 10, Emma Pietrafesa was given a magic wheelchair to kick off the Boynton Beach Barrier Free 5K celebration weekend. The 10-year-old was named the official starter of the race earlier this year. The wheelchair was unveiled at a pre-race ceremony at...
by Gabbie Nadeau | Oct 17, 2018 | Uncategorized
Laird G. Jackson, MD, FFACMG, was honored with the 2017 American College of Medical Genetics and Genomics (ACMG) Foundation David L. Rimoin Lifetime Achievement Award. Dr. Jackson became involved with CdLS from 1962 to the present, and even mentored current CdLS...
by Gabbie Nadeau | Oct 17, 2018 | Uncategorized
On March 9, 2017, the CdLS Foundation was announced as an official One by One Award Recipient. This is the second time the Foundation has been honored with a $500 promotional products grant to use toward awareness materials. One by One is the charitable giving program...
by Gabbie Nadeau | Oct 17, 2018 | Uncategorized
In March of 2017, the CdLS Foundation launched a t-shirt jersey campaign with the first-ever personalization option. Inspired by mom Samantha McClanahan, the Foundation collaborated with a local, independent printing shop in Lawrence, Kansas. After a two-week sale,...
by Gabbie Nadeau | Oct 17, 2018 | Uncategorized
Our friend Demetri was recently featured in Woman’s Day Magazine with his therapy horse, Sweet Pea. The two first met last year at an infant development center in Kansas. Demetri is deaf, nonverbal and legally blind, which are common characteristics of CdLS, but...
by Gabbie Nadeau | Oct 17, 2018 | Uncategorized
The Mercer County Professional Counselors Association (MCPCA) recently recognized local high school seniors for their community service efforts and academic achievements. The 15 students were hosted at the 22nd annual scholarship breakfast reception at Mercer County...
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