Calendar of Events

Whether you're looking for the next family gathering, a golf tournament, or just want to see what's going on in your region, the calendar of events has all the what, when and where you need.

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April 2019

Genetic Testing and CdLS Webinar

April 24 @ 12:00 pm - 1:00 pm

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…

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Midwest Region Family Gathering

April 27
Beautiful Savior Lutheran Church, 7706 South 96th Street
LaVista, NE 68128 United States
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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…

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May 2019

Midwest Region Family Gathering

May 4 @ 1:00 pm - 4:00 pm
Bloomfield Hills Schools, 7273 Wing Lake Road
Bloomfield Hills, MI 48301 United States
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2019 TD Five Boro Bike Tour

May 5
New York City

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…

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How to Address Challenging Behaviors Webinar

May 9 @ 1:00 pm - 2:00 pm

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.

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Northeast Region Family Gathering

May 18 @ 11:30 am - 2:30 pm
De Hart Community Center, 120 Burnett Ave
Maplewood, NJ 07040 United States
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Hosted by Karen Aschenbrenner and Robert Boneberg, parents of Alex

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New England Charity Golf Tournament

May 20
Ipswich Country Club, 148 Country Club Way
Ipswich, MA 01938 United States
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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.

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August 2019

Missouri Family Gathering

August 17
Wonderland Camp, 18591 Miller Circle
Rocky Mount, MO 65072 United States

Hosted by the Rauba Family For more information contact Lynn Audette at families@CdLSusa.org

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October 2019

2019 Bank of America Chicago Marathon

October 13
Chicago

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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2019 Baltimore Running Festival

October 19
Baltimore
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