World Down Syndrome Day is Saturday, March 21st and we are hosting a party for all of our families in midtown Kansas City! This event posting will be updated in January with more details. Stay tuned to our social media and email announcements.  SAVE-the-DATE for now because you don't want to miss this event!

As adults with Down syndrome live longer and healthier lives, families and caregivers play an essential role in supporting their independence, safety, and overall well-being. This presentation provides practical, evidence-informed strategies to help adults with Down syndrome successfully navigate the aging process.

Participants will learn how aging may uniquely impact physical, cognitive, sensory, and emotional health in individuals with Down syndrome and how to promote daily functioning at home and in the community. The presentation will cover key areas such as adapting activities of daily living, supporting mobility, promoting meaningful engagement, and implementing home and environmental safety strategies.

Caregivers will leave with tools, resources, and simple adaptations they can use right away to enhance quality of life, encourage independence, and ensure a safe and supportive environment as their loved one ages.

Morgan Hodges, OTR/L is a licensed Occupational Therapist committed to helping individuals build independence and improve daily living skills. She earned her Bachelor of Science in Kinesiology from the University of Arkansas and her Master of Occupational Therapy from the University of Kansas Medical Center. Morgan is passionate about providing client-centered, functional therapy to support meaningful participation in everyday life.

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

Join us on March 28th, from 10:30 to 11:30, 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. 

Rhythm & Play on March 28th, from 12:45 to 2:00pm, invites young children to move, groove, and explore, alongside their parents, in a fun, developmentally supportive environment. Each session begins with upbeat music and simple dance movements that build coordination, balance, and body awareness. Children will sing, stretch, and move their bodies creatively as they follow along with guided rhythm activities. 

Designed for all abilities, this class encourages social connection, creativity, and joyful movement—helping children build important skills while having a blast.

If you have any questions please email alyssa@kcdsi.org

Blue Valley 2026 Special Needs Resource Fair

Please join us at the 16th Annual Blue Valley Special Needs Resource Fair!

(No Registration Required)

This is a free and public event.  You do not need to have a connection to Blue Valley Schools to attend. All are welcome.

There will be vendors and information supporting:

- different abilities of all kinds

- therapies and camps

- insurance and case management support

- nutrition and visual needs

- college and continuing education

- financial and legal questions and planning

- pediatric to adult transition resources

- emergency and employment services

- AND so much more!

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

SAVE-the-DATE for now because you don't want to miss this event! This event posting will be updated in January with more details. Stay tuned to our social media and email announcements.  

Hosted by Down Syndrome Innovations, Special Olympics Kansas, and The University of Kansas Medical Center, 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!