April 2019
Genetic Testing and CdLS Webinar
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 Clinic Coordinator for The Center for Cornelia de Lange Syndrome and Related Diagnoses at the Children’s Hospital of Philadelphia. Sarah is a member of the…
Find out more »Midwest Region Family Gathering
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 to experience the sleepless nights, the never ending tests and procedures and the concerns that a diagnosis of CdLS can bring, than another parent who…
Find out more »May 2019
2019 TD Five Boro Bike Tour
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 with: • Guaranteed entry and placement in the first Start Wave • An official Team CdLS singlet • Pre-Race Luncheon • VIP Access to the…
Find out more »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., is a Clinical Psychologist and the Director of Day Treatment Services at the Neurobehavioral Unit at Kennedy Krieger Institute. Her specialty is behavior problems, including self-injurious behavior. She volunteers her time as a behavior consultant for the Foundation’s Clinical Advisory Board (CAB) and the Baltimore CdLS clinics.
Find out more »Northeast Region Family Gathering
Hosted by Karen Aschenbrenner and Robert Boneberg, parents of Alex
Find out more »New England Charity Golf Tournament
Join us and other families in New England to celebrate the 27th Annual CdLS Foundation New England Golf Tournament. The tournament takes place at the Ipswich Country Club in Ipswich, MA. Participants will enjoy 18 holes of golf, brunch, dinner and an opportunity to win both skill and door prizes. Register for the golf tournament here.
Find out more »August 2019
Missouri Family Gathering
Hosted by the Rauba Family For more information contact Lynn Audette at families@CdLSusa.org
Find out more »October 2019
2019 Bank of America Chicago Marathon
Many runners say that running has changed their lives. Team CdLS runners say that they have changed the lives of others. Join the Cornelia de Lange Syndrome (CdLS) Foundation at the world-renowned Bank of America Chicago Marathon Sunday, October 13, 2019 The CdLS Foundation will be there with you every step of the way, providing you with: • Guaranteed race entry • Complimentary entry to the Balbo Hospitality Tent • An official Team CdLS singlet • Pre-Race & Post-Race Dinner…
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