The CdLS Blog
Celebrating Norm
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...
UPSTREAM ARTS Offering WEEKLY CLASSES to the CdLS Community
Minneapolis, MN based Upstream Arts is inviting the CdLS community into the virtual world for weekly Live Streaming Zoom classes. As parents of a 28 year old child with CdLS who inspired Upstream Arts' work and mission, we hope we can bring some play and joy into your...
Teaching Remotely for Grades K – 12 | Free Resources and Strategies
Scholastic's Learn at Home provides free active learning resources to help reinforce and sustain educational opportunities for students who are unable to attend school. You can keep the learning going with these special cross-curricular journeys. Every day includes...
Protected Tomorrows: Parent University
Protected Tomorrows will continue to provide their free Parent University webinars. If you have time to listen to the prior classes while you are staying in place at home, consider this an opportunity to do some planning. They look forward to helping you move forward...
Resources from CdLS Experts
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....
COVID-19 CdLS Foundation Update
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 fighting...
Ways to Relax at Home
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....
Free Webinar Announced – A Rare Response: Addressing the COVID-19 Pandemic
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,...
Fun Activities to do at Home with Your Kids
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...
A Message on Gene Therapy
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...
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