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 27, 2020 | Uncategorized
Having your loved ones home with you for the past few weeks can be stressful. Schedules have changed, home learning is a new and stressful process, therapies are different and you are holding it together. You rock! However, at the end of the day, you are also drained....
by Gabbie Nadeau | Mar 25, 2020 | Uncategorized
Are you a rare patient or caregiver with concerns related to the COVID-19 outbreak? Do you need strategies for coping, staying healthy and reducing anxiety during this uncertain period? Please join NORD for a special webinar featuring Dr. Marshall Summar, Chief,...
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 | Mar 16, 2020 | Uncategorized
Dear Members of the CdLS Community: In light of the growing public health concern around COVID-19 and the global potential for public transmission, we have a responsibility to the CdLS community to minimize the risk associated with spreading the virus. As a result,...
by Francesca Scognamiglio | Mar 9, 2020 | In Memoriam
Molly deeply touched the lives of all who knew her. Her small stature belied her tenacious spirit. Although she never spoke a word, Molly taught us lessons every day of her short life. Most importantly, to slow down and appreciate the simple pleasures in life She...
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