The CdLS Blog
How to Plan Finances to Raise a Special-Needs Child
By Paul SullivanThe New York Times (https://nyti.ms/2RanViN) Carole and Michael Maguire were careful to plan early for the financial needs of their daughter Ally, who is now 19 and attends the Riverview School on Cape Cod, Mass.Credit Credit Kieran Kesner for The New...
Mothers of Children with Rare Genetic Syndromes Experience Stress Similar to Moms of Autistic Kids, Study Finds
https://angelmansyndromenews.com/2018/12/14/mother-of-children-with-angelman-syndrome-experience-high-levels-of-stress-similar-to-mothers-of-children-with-autism/
My Experience Attending the 2018 ASHA Convention
Michele Champion, M.Ed., Special Education, CdLS Foundation Professional Development Committee I recently had the opportunity to attend an ASHA (American Speech-Language-Hearing Association) Convention in Boston. ASHA is the national association for members and...
FDA Safety and Innovation Act: A Step Forward for Patients With Rare Diseases – NORD
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...
Facial recognition zeroes in on genetic disorders
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...
UK research on Cornelia de Lange Syndrome
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...
Young girl with CdLS gets magic wheelchair, leads race
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...
Foundation’s first medical director honored with lifetime achievement award
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...
CdLS Foundation named One by One grant recipient
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...
Showing Your Team Spirit
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,...
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