CdLS Foundation Webinar Series

The CdLS Foundation is proud to present it’s annual webinar series featuring talks from medical and educational professionals. Each hour long session will cover important topics including gastroenterology (GI), genetic testing, behavior and medication.

Each webinar will feature a professional and hosted by the CdLS Foundation’s Family Services staff.


Gastrointestinal (GI) Challenges: Critical Care and Treatment Approaches

This webinarprovided an overview of malrotation, volvulus, bowel obstruction and pancreatitis. It also reviewed treatment and care approaches to these challenges.

Presenter: Carol Potter, M.D.

Powerpoint presentation

Neurodevelopmental Disorders and Behavioral Management in Cornelia de Lange Syndrome (CdLS)

This webinar provided an overview of neurodevelopmental challenges, including approaches to treatment, in Cornelia de Lange syndrome (CdLS). Individuals with CdLS can be affected by a number of developmental disorders, including intellectual disability, autism spectrum disorder, language disorder, ADHD, aggression, repetitive self-injurious behaviors, anxiety, and depression. This webinar will discuss each of these domains as it relates to CdLS, as well as strategies for pharmacological intervention.

Presenter: Siddharth Srivastava, M.D.

Powerpoint presentation

How to Address Challenging Behaviors Webinar

This webinar will discuss:
• Self-injury
• Impulse control
• Destruction of property
• Determining the appropriate consequences
• Treatment options (ABA, etc.) or professional resources for families

Presenter: Julia O’Connor, Ph.D.

Powerpoint presentation

Genetic Testing and CdLS

This webinar discussed:

  • Clinical vs genetic testing
  • Various gene mutations associated with CdLS
  • Genetic testing that is available (including prenatally)
  • What are the benefits of getting tested
  • Are there different medical approaches to treatment for the various gene mutations
Presenters: Sarah Raible, M.S., C.G.C. and Alena Egense, MGC, CGC.

Phenotypic Analysis of Patients with SMC1A Mutations and Epilepsy

This webinar discusses how girls with SMC1A and epilepsy fit into the spectrum of Cornelia de Lange Syndrome (CdLS). It characteristics of their seizures, as well as treatment.

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