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 […]
Hosted by Karen Aschenbrenner and Robert Boneberg, parents of Alex
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 […]
This webinar will provide 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 […]
Families are asked to bring a dish to share potluck style. Everyone is welcome! Please RSVP by 7.19.19 with the number of adults/children that will be attending You may email Paula Messer at pmroncales@verizon.net or Emily Muñoz at elbrummitt@gmail.com or Whitney Rinaldi, Family Service Coordinator at the CdLS Foundation 1.800.753.2357 or Familyservice@cdlsusa.org
