By Jennifer Little

For the last several NODCC conferences, I served as the moderator for the Extended Family networking sessions. This session is full grandparents whose grandchildren have a disorder of the corpus callosum, but there are also aunts, uncles or other family members too. In these sessions, grandparents share their own emotional journeys when there is a diagnosis in the family. Grandparents talk about their own heartbreak as they watch their adult children deal with the difficulties that come with raising a child with callosal conditions. Many just want to learn more so they can better support their children. One year, a frustrated mother asked grandparents how to encourage her own parents to be more supportive. There are so any different dynamics within each family it’s not a session that gives all the answers, but a time when extended family are surrounded by others who understand the challenges and can offer suggestions based on their own experiences.

As the aunt of a teenage niece who has partial agenesis of the corpus callosum, I enjoy seeing extended family attend the conference alongside their loved ones and champion our cause throughout the year. In 2005, I traveled with my sister and her daughter as we attended our first conference in South Carolina. I had no idea what to expect, but in my heart, I knew that I wanted to support my sister and learn as much as I could about the conditions and the NODCC. I was welcomed with open arms and invited to join a committee on the Board which led to serving on the Board of Directors, attending many more conferences, and now serving in a communication role. The NODCC continues to have extended family members serve on the Board of Directors, and there are always many opportunities to join committees or apply for Board leadership. This organization is truly a place for the entire family.

This month, since Grandparents Day is September 13, we are launching a private Facebook group for grandparents and extended family. Our hope is that through this group, we can provide a place for extended family members to build connections, ask questions, seek advice and celebrate achievements similar to the experiences of the moms, parents, adults and other groups on social media. We know for many families, grandparents and extended family are a lifeline and major part of the care giving team, while in other families that support may not be possible or needs strengthening. We invite you to share the link to the group with your family members and see where it leads.

Grandparents and Extended Family Facebook Group: