By: Mary Ragon Allen & Kasee Stratton-Gadke
Bulldog CHARGE Syndrome Research Lab
Mississippi State University
Since 2021, our CHARGE Adult Socials have connected individuals with CHARGE Syndrome around the world. What began during the COVID-19 pandemic to connect individuals when conferences were canceled has turned into something much greater. Today, we continue to host monthly socials to facilitate a larger support system and advocate for adult issues in CHARGE. Growing more important than we could have ever imagined, due to this network, adults with CHARGE have been able to have their own sessions/presentations at international conferences, leading and speaking on critical topics important to them.
How do the socials work?
Adult socials take place virtually via Zoom and are facilitated by Dr. Stratton-Gadke and Bulldog CHARGE Lab members from Mississippi State University. We meet monthly from September to May. Members of the Lab help facilitate access, introduce discussion topics, and troubleshoot the technological side of our socials. ASL Interpreter and co-partner on our socials, Susie Morrow, and her team of interpreters, ensure that everyone can engage and participate. Susie has also generously taken the lead on specific topics adults have requested or when facilitation is needed—it’s a real team effort!
Why can’t a parent or caregiver join?
We strive to maintain a safe, welcoming, and confidential environment by allowing only adults or young adults with CHARGE to join. This allows participants to connect and share freely without the presence of parents or caregivers. Conversations cover a wide range of topics, from catching up on life after breaks and holiday plans to navigating relationships and independence in adulthood, employment, social relationships, family dynamics, etc. The conversations are fully driven by the participants, with the Bulldog CHARGE Lab team there to guide conversations that arise in the moment or prepare presentations on requested topics. The “rules” for the group are reviewed each month, and the attendees have continued to voice their need for a supportive and confidential space.
What about access needs?
We are committed to meeting each individual where they are for communication access. For example, we use closed captions, ASL interpreting, the Zoom chat box, or other supports. We consider exceptions to our rules carefully and our adult group makes the final decision on their comfort level with an individual who does not have CHARGE joining a meeting, for example, an intervener, professional caregiver, etc. Overall, our goal is to strive to ensure that everyone has the chance to participate in a way that works best for them while also respecting the purpose of the group—to provide a safe, supportive, and confidential environment for adults with CHARGE to connect.
Broadly, we believe the adult socials provide individuals with CHARGE with social-emotional support, self-understanding, friendship, and acceptance. For many participants, our socials are some of the only times they can interact with other adults with CHARGE outside of conferences. Parents and caregivers have had a longstanding network of support from the early Yahoo Listserv days hosted by the CHARGE Syndrome Foundation, to parent Facebook pages and conference presentations to assist their journey as caregivers. We appreciate the CHARGE Syndrome Foundation’s support of the adult socials, as we see the need to extend our support throughout the lifespan in CHARGE. As a Lab, we are thankful for the opportunity to facilitate the monthly socials—it’s one of our favorite initiatives.
How do I sign up?
If you are an adult with CHARGE syndrome who would like to join our monthly socials, email Mary Ragon at [email protected]. Dates will be posted by the CHARGE Syndrome Foundation and the Bulldog CHARGE Syndrome Research Lab Facebook page.
