Events

Many runners say that running has changed their lives. Team CdLS runners say that they have changed the lives of others. Kick off the running season with the Cornelia de Lange Syndrome (CdLS) Foundation at the United Airlines NYC Half Marathon Sunday, March 17, 2019 The CdLS Foundation will be there with you every step […]

Hosted by Fran Rissland, mom to Riley For more information contact Fran at [email protected]

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This webinar will discuss: • 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., is a Genetic Counselor and […]

Save the date for the Midwest Family Gathering!  Hosted by Christy and Dave Whetstone!  Join families in the midwest region to spend time together talking, sharing stories, laughing, and learning from one another. The connections made between parents, grandparents, children, relatives, and professionals can last a lifetime. Who better to talk about what it’s like […]

Many bicyclists say that biking has changed their lives. Team CdLS bicyclists say that they have changed the lives of others. Join the Cornelia de Lange Syndrome (CdLS) Foundation at the TD Five Boro Bike Tour Sunday, May 5, 2019 The CdLS Foundation will be there with you every step of the way, providing you […]

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., is a Clinical Psychologist and the Director of Day Treatment Services at the Neurobehavioral Unit at Kennedy Krieger Institute. Her specialty is behavior […]