Caregiver Connection: DS – ASD is a virtual gathering of caregivers to discuss resources, strategies, community supports, and challenges related to a child or adult’s current or potential dual-diagnosis of Down syndrome and Autism Spectrum Disorder.

This group is facilitated by Down Syndrome Innovations staff, and we will occasionally invite special guests with expertise in this area.  This is a complimentary caregiver education opportunity, provided in addition to the individualized services we provide directly for individuals with DS-ASD for the purpose of skill-development, improving self-regulation and behavior, and increasing independence.

We are providing this group virtually to ensure we are being inclusive of families throughout the region and those who are not able to access transportation, as we understand that facing a dual-diagnosis can already feel isolating in and of itself.  We understand this is a subgroup of the entire population we serve, with unique challenges and experiences, and we hear how important it is for you all to feel connected. We hope that meeting one another in this group will organically open up opportunities for you all to spend time together face to face as you develop meaningful connections with one another.

All registered participants will receive a Zoom link from the instructor. 

Dates: Jan 16th, Feb 28th, March 13th, April 11th, May 15th, June 20th, July 17th, Aug 15th, Sept 11th, Oct 17th, Nov 13th, Dec 5th (Alternate Fridays & Saturdays) 

Time: 9:30am-11am 

Location: DSI -Large Therapy Room

Description: Join us for a joyful and engaging class designed for babies, toddlers, and their caregivers! Music & Motion blends tummy time, music, and movement to support early development in a fun, relaxed setting. Each session includes songs, mini instruments, and gentle guided movement — followed by time to connect with other parents over coffee and snacks. 

Whether you’re a new parent or looking to build your village, this is a great space to bond, play, and grow together. 

This service is for babies and toddlers with Down syndrome who are 6 months- 3 years old and caregivers. Childcare for siblings is available per advanced request in the registration form. 

Caregiver Connection: Aging Years offers an opportunity for caregivers to discuss resources, strategies, community supports, and challenges related to caring for an aging loved one with Down syndrome.

We understand this is a growing group of entire population we serve, with unique challenges and experiences, and we hear how important it is for you all to feel connected. We hope that meeting one another in this group will organically open up opportunities for you all to spend time together face to face as you develop meaningful connections with one another.

All registered participants will receive a Zoom link from the instructor. 

Join us for this meaningful parent-to-parent conversation on aging, dementia, grief and Down syndrome with Buddy and Carolyn Jones, in collaboration with Down Syndrome Innovations (DSI) and KU Alzheimer's Disease Research Center (KU ADRC). In addition to sharing their family’s personal story, Buddy and Carolyn will encourage other parents to proactively develop a plan for their loved one in anticipation of regression in the aging years and specifically, Alzheimer's disease. 

Buddy and Carolyn Jones have been effective trailblazers and system-change advocates throughout their son's entire life, as well as being mentors and supportive friends to so many parents, service providers, and physicians. Additionally, Buddy and Carolyn have remained in close contact with the teams at Down Syndrome Innovations and the KU Alzheimer’s Disease Research Center, providing vital parent perspectives on services, interventions, and research.

Now they have chosen to sit down for an intimate conversation with other parents who could face a similar experience with their aging loved one, and ensure no one else feels isolated or without resources in this stage of the journey.

Both DSI and KU ADRC acknowledge the science that nearly all adults with Down syndrome will develop evidence of Alzheimer’s disease by late middle age, and therefore  our organizations are taking an active role in education, research, services and supports for aging individuals with Down syndrome and their caregivers. At the conclusion of this presentation, DSI and KU ADRC will guide families in practical next steps.  

All attendees are welcome to come at 6:00pm for a casual caregiver connection time prior to the presentation. DSI will provide drinks and refreshments during this time. 

Service providers and medical professionals are welcome to join to learn and observe. However, we will prioritize the questions of caregivers and parents due to time limitations and the goals of the speakers.  DSI is available to all community partners as a resource in the area of aging and Down syndrome and follow-up consultation is available. 

This presentation will focus on guiding families and caregivers through healthy, developmentally appropriate conversations about puberty, sexuality, and reproductive health. It will outline when to begin thinking about these topics and provide clear strategies for when and how to discuss them respectfully and age appropriately. Attendees will learn about useful resources—including recommended books, visual supports, and teaching tools—that can make these conversations easier and more accessible.

Overall, this session is designed to help caregivers approach sexual health education with confidence, clarity, and practical tools that support the well-being and autonomy of the individuals they care for.

Dr. Kristie Marble is a board-certified Pediatrician and a board-certified Pediatric Hospitalist at Children's Mercy Kansas City. In addition to her hospitalist role, she proudly serves as one of the pediatricians in the Multidisciplinary Down Syndrome Clinic. Her dedication to the Down syndrome community is both professional and deeply personal as it was sparked 17 years ago following the birth of her daughter, who was diagnosed with Down syndrome right after birth. This personal journey inspired her to become an expert in the field and commit herself to educating medical professionals. She is now excited to leverage both her clinical expertise and lived experience to support and educate other parents and families navigating their own paths, in partnership with Down Syndrome Innovations.

If you have any questions please email CJ, at cj@kcdsi.org

Join us for our 2026 Family Social Gatherings in Central Missouri! This is an opportunity for families to meet and exchange stories, resources, and fellowship!

Dinner and childcare will be provided for families. Please be sure to RSVP in advance!

Hosted by Down Syndrome Innovations, Special Olympics Kansas, and The University of Kansas Medical Center, the 4th annual 321 Fit is back! 321 Fit is a fitness event for ALL AGES that features interactive fitness stations, presentations from self-advocates, a caregiver session, Zumba, healthy snacks, giveaways, and booths from local organizations and businesses serving the Down syndrome community.

This event is designed not only to inspire your self-advocate to be active and healthy, but also allows them to participate in it right away! There is something for all ages, abilities, and interests! We hope to see you there to continue you on your fitness journey with us!

Join us for a fun-filled morning of play, exploration, and connection at Wonderscope! We encourage families to meet up with one another and make new friends. This social time is for kiddos with Down syndrome who are in elementary school, and their siblings, as we want to offer a welcoming and inclusive space in the community for your children to build friendships, develop social skills, and enjoy hands-on learning experiences throughout the museum. 

DSI will cover the cost of entry for all children with Down syndrome and one additional family member (parent and sibling).  Advanced registration is required. 

DSI staff will attend to engage in play with the kids and be a resource to families, however, parent supervision is required for all kids attending. 

We hope to see you there for learning, laughter, and community!