The Annual NDSC Conference: It’s A Family Affair
New Orleans is a city traditionally known for celebrations and, in the years following Hurricane Katrina, gained a reputation of strength and determination through tremendous challenges. After a two-year in-person hiatus, it was only fitting that New Orleans served as the in-person home of the 2022 National Down Syndrome Congress (NDSC) Conference. Known for a multitude of non-stop inspirational, educational, and motivational moments, the 2022 NDSC Conference drew interest and attendance from individuals and organizations worldwide. Presidents, site managers, board members, and families from a multitude of GiGi’s Playhouses across the United States found themselves once again meeting friends, sharing ideas, and making more incredible memories as one big family.
The annual NDSC Conference is comprised of many individual events and programs that serve individuals with Down syndrome along with those who live with, love, and/or employ them. Breakout and long-form, deep-dive sessions featured nationally renowned speakers, educators, and thought leaders showcasing a myriad of topics from government advocacy, research-based content, and best practices. NDSC also welcomed Valerie Williams, a mother of a son with Down syndrome, and Director of the US Department of Education Office of Special Education Programs (OSEP). She conducted listen-and-learn sessions with parents to discuss inclusion and transition in our school systems, and OSEP will take information from that session back to Washington, D.C. to further advocate for the rights of those with intellectual disabilities. Of course, with any conference in the Big Easy, there must be fun! GiGi’s Playhouse New Orleans fits the bill and provided a great NoLA-style Open House party. Many conference attendees and dignitaries got to experience the welcoming feeling of what it is truly like to be in one of our Playhouses!
After four days of non-stop inspiration, attendees come away with motivation and a true belief of what individuals with Down syndrome can and will accomplish. One of those attendees that spread belief non-stop through her words and actions received the highest level of awards at this year’s conference. As her impassioned voice trembled throughout the acceptance of the honor, our very own Chief Belief Officer, Nancy Gianni, was deservedly presented the 2022 Exceptional Meritorious Service Award for her relentless and tireless service to the entire Down syndrome community.
Along with a multitude of her supporters in the audience, clapping during the honor, were members of the Renner family from Oak Park, Illinois. Katie, a former GiGi’s Playhouse Board Member, and Rick Renner are the parents of Mickey, a vibrant 17-year-old son with Down syndrome, and his older sister and mega-advocate, Ella. Members of the Renner family have attended multiple NDSC Conferences. Their first was in Kansas City, Missouri in 2007. “Ella loved it from the first session,” Katie says when asked about the Sibling Conference portion of NDSC. This was the fourth year Ella attended and, because she is now college-aged, was eligible to serve as a sibling leader.
“She made friends through the years with lots of kids who go every year, so she had a really good network and the girl who headed-up the Sibling Conference this year was someone she’s known for years. She’s always gotten a lot out of it” Katie adds. Ella helped deliver content applicable to siblings of individuals with Down syndrome in an environment where open and honest communication was encouraged. Categories of discussion ranged from advocating against the use of the R-word to the importance of setting a good example of how to act towards others. After returning to Oak Park, Katie asked Ella if she could rank her experience on a scale of one to ten. Ella replied with exuberance, “It was a 10! I’m definitely doing it again next year!”
Individuals with Down syndrome are welcome to attend the national event once they turn 15 years old, and this was the first year that Katie and Rick’s son, Mickey, was old enough to go. Mickey participated in, what is the heart and soul of the conference, The Youth & Adults (Y&A) Conference comprising of advocates (those with Down syndrome), who planned and presented this fun, inspirational and empowering event. The Y&A made the 2022 NDSC Conference even more special for the Renner’s because it was the first time all of their family members could attend. Katie recalls a key component of what they, as a family, and so many attendees take home from the conference.
“You are walking with other people who are living the same life that you are. You connect. You can talk about things (and) learn from each other” Katie explains. When asked to describe the reasons parents and families like hers attend, she replies, “I think it’s a combo of parents who are part of a larger network already and know people who are going, and they are trying to bring back things to their organizations, but there are also a lot of people who might live where they don’t have a big network. The convention is their only time to spend that much time with other people with Down syndrome, with other families, and to see these speakers.” Katie continues to say that she feels that the NDSC Conferences help “fine-tune what you know you should be doing or what you are already doing.” She adds that she feels motivated each time she attends to take one new idea away that she can implement at home.
Providing a positive, motivational takeaway is a key goal of the Conference, and Nancy and GiGi Gianni, along with Shari Andress, GiGi’s Playhouse National Education Coordinator, lead a special session that proved GiGi’s Playhouse is an innovative thought leader. During their “How I Learn” session, tools and ideas were shared that are integral to bridging gaps in learning and developing higher levels of communication between individuals with and without Down syndrome.
Thanks to the creativity and expertise of thousands of staff and volunteers, new ideas and tools, like those shared at the NDSC Conference, are a regular occurrence at GiGi’s Playhouse locations. These concepts are also shared on our podcast, A Little Something Extra. While at the Conference, hosts Nancy and GiGi Gianni interviewed many guests, including Dr. Brian Skotko, Director of the Down Syndrome Program at Massachusetts General Hospital. Dr. Skotko has dedicated his professional energies toward children with cognitive and developmental disabilities. Also interviewed was Sean McElwee from the hit A&E TV show Born This Way. Stay tuned for announcements about the release of A Little Something Extra Season Two, where these and other great interviews will be featured.
To say this year’s Conference was tremendously successful is an understatement. Whether it was during the Thursday evening GiGi’s Playhouse New Orleans open house, advocacy training boot camp at the Research & Medical Care Roundtable, the “How I Learn” session or any of the other amazing sessions, the 2022 NDSC Conference truly offered something for everyone in the family. Regarding Mickey Renner’s first-time experience, his mom Katie says that he enjoyed everything so much that she expects to attend for years to come.
In 2023 the event will be held in Orlando, Florida. To learn more, visit ndsccenter.org/annual-convention/.