The CdLS Blog

Ways to Relax at Home

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....

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Fun Activities to do at Home with Your Kids

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...

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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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CdLS NATIONAL CONFERENCE UPDATE

CdLS NATIONAL CONFERENCE UPDATE

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.

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Goodbye Lynn

Goodbye Lynn

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...

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We Lost a Giant

We Lost a Giant

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...

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From Trauma to Triumph

From Trauma to Triumph

Marckis Mountz is the youngest of seven children, all raised by loving parents Jana and Ken. Marckis grew in his mom’s heart and not her belly. Marckis was born at 37 weeks weighing 2 pound 2 ounces and only 14 inches long. Being so small Marckis had to overcome many obstacles including a smaller head, limb differences in his right thigh and hand, a heart defect which required open heart surgery at 4 months and hearing loss.

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