by Gabbie Nadeau | Aug 11, 2022 | Uncategorized
Inspiring Individuals Asmita and Kavin Mistry Kavin is a 23-year-old young man who has a strong affinity for music. He loves to sing songs in multiple languages, from genres and artists around the world. Music motivates and energizes him, but it also calms and soothes...
by Gabbie Nadeau | May 3, 2021 | Uncategorized
As we know COVID-19 has changed the way we interact and socialize with others. Most of our high function adults with CdLS were struggling with managing changes to their daily routine such as not being able to; attend day programs, return back to work or go out into...
by Gabbie Nadeau | Jan 7, 2021 | Uncategorized
Update as of November 2021, We now have COVID immunization for 5-12 year olds. This is a lower dose, because their immune system is so much better and quicker than those of teens and adults. We strongly encourage all children with CdLS at those ages to receive the...
by Gabbie Nadeau | Oct 6, 2020 | Uncategorized
Norm Winnerman, valued member of the CdLS Foundation will be receiving the Rare Impact Award from NORD. NORD will be honoring all exceptional awardees, virtually, on October 9, 2020 at 7:00 pm EST. The award honors his years of service as a pioneer, mentor and...
by Gabbie Nadeau | Apr 1, 2020 | Uncategorized
With social distancing, school closures and many other essential services being closed due to COVID-19. We have compiled a list from our CdLS experts on in-home therapies that you can do with your loved ones to ensure that they are still working on their well-being....
by Gabbie Nadeau | Mar 30, 2020 | Uncategorized
Updated: 3/27/2020 3:52 PM We have been able to gather more information regarding CdLS and COVID-19. “Individuals with CdLS and immune deficiency have “antibody immune deficiency”. Antibodies are not a critical part of the immune system necessary for...
by Gabbie Nadeau | Mar 23, 2020 | Uncategorized
With schools closing and stay at home orders are being put into place, the CdLS Foundation wants to make sure the community has plenty of activities to do with being at home. The staff has found some pretty great ideas to help offset boredom and help...
by Gabbie Nadeau | Mar 19, 2020 | Uncategorized
To all our member families, We want to address the issue of Cornelia de Lange Syndrome and gene therapy, both to dispel any rumors that have been circulating and to paint a realistic picture of where things stand right now. Gene therapy is a recent advance in the...
by Gabbie Nadeau | Oct 31, 2019 | Uncategorized
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...
by Gabbie Nadeau | Oct 21, 2019 | Uncategorized
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...
Recent Comments