by Gabbie Nadeau | Apr 25, 2019 | Uncategorized
By Karen Dandurant news@seacoastonline.com PORTSMOUTH — May 11 is awareness day for Cornelia de Lange syndrome, a rare genetic disorder. The Lyons family of Portsmouth knows all about it. Their son Luke, now 11, was born with CdLS, which has variations from mild...
by Gabbie Nadeau | Mar 12, 2019 | Uncategorized
“We had waited 10 weeks to see our beautiful baby on the ultrasound screen again. Do to an insurance issue preventing us from getting any scans between 20 and 30 weeks, naturally my anxiety was overwhelmingly high that morning of our 30-week scan, the morning our...
by Gabbie Nadeau | Feb 28, 2019 | Uncategorized
Dear CdLS Community, On this day – February 28th – the rarest day of the year, we take a moment from our daily lives to bring awareness about our community and what it means to live with a rare syndrome or disease. I had the opportunity yesterday to listen...
by Gabbie Nadeau | Feb 4, 2019 | Uncategorized
Each year on the second Saturday of May, CdLS Awareness Day is celebrated nationwide. The goal of Awareness Day is to raise awareness of CdLS through passionate volunteers and inspire people to learn about the Foundation. This year the CdLS Foundation will be holding...
by Gabbie Nadeau | Jan 16, 2019 | Uncategorized
“Tension filled the silent labor and delivery room. Much like the oppressive humidity of a hot summer day, the air was thick with fear. I sat up in bed, my back supported by pillows. I was surrounded by five doctors, a nurse, Steve, and my twin sister, all of whom...
by Gabbie Nadeau | Dec 27, 2018 | Media Room, Uncategorized
The following is from a submission by Stephanie Parish, Minute Man Arc. Valerie Lessa, of Concord, graduated from an eight-week Self-Advocacy Leadership Series at Bridgewater State University on Sept. 5. [Courtesy Photo] On Sept. 5, Valerie Lessa, a Minute Man Arc...
by Gabbie Nadeau | Dec 27, 2018 | Uncategorized
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...
by Gabbie Nadeau | Dec 17, 2018 | Uncategorized
Mothers of Children with Rare Genetic Syndromes Experience Stress Similar to Moms of Autistic Kids, Study...
by Gabbie Nadeau | Dec 12, 2018 | Uncategorized
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...
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...
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