CCDS Community Chat Series
CCDS families around the world are invited to gather virtually to discuss topics of interest, build connections, and learn from one another. Meetings will typically begin with a presentation from a topic expert followed by open discussion from the audience. If you are a caregiver, family member, or invited support person of an individual with a CCDS, please join us at the following 2023 gatherings:
July 2023- “Cardio Issues in CCDS”
Guest speaker, Dr. Mark Levin- pediatric cardiologist at the NIH and CCDS Expert Panel member will share information on cardio issues sometimes seen in CCDS, how to assess your child’s risk, and the recommended long-term testing and monitoring. Participants will have the chance to ask questions.
September 2023 – “The CCDS Grandparent Experience”
Guest speaker TO BE DECIDED. We will discuss how grandparents can best support their child and grandchild while dealing with their own emotions around the CCDS journey. Participants will share success stories, concerns, and connect with other grandparents.
October 2023 – “Seizures in CCDS”
Guest speaker TO BE DECIDED. We will hear about different seizure types. ACD will share goals of the patient registry seizure survey, and share any early findings. There will be time at the end for participants to ask the expert speaker any questions on seizures they may have.
November 2023- “The Fathers’ CCDS Caregiver Experience.”
Guest speakers will include CTD Dad and ACD Board Member Randy Allen. We will discuss the impacts of a rare disease diagnosis unique to fathers and provide a platform for the dads in our community to connect and support one another.