Down syndrome
Learn about our Brain Health in Down Syndrome program.
Our Mission
Alzheimer’s disease impacts close to 90% of people with Down syndrome, with the average age of diagnosis around 50 years of age. The University of Kansas Alzheimer's Disease Research Center launched the Brain Health in Down Syndrome Program to drive efforts to prevent or delay Alzheimer's disease in individuals with Down syndrome.
The Link Between Alzheimer's and Down syndrome
People with Down syndrome are born with an extra copy of chromosome 21, which carries a gene that produces a specific protein called amyloid precursor protein (APP). Too much APP protein leads to a buildup of protein clumps called beta-amyloid plaques in the brain. The presence of beta-amyloid plaques is one of the hallmarks of Alzheimer's disease. By age 40, most people with Down syndrome have these plaques, along with other protein deposits, called tau tangles, which cause problems with how brain cells function and increase the risk of developing Alzheimer’s symptoms.
The KU ADRC is working hard to understand why some people with Down syndrome develop memory changes related to Alzheimer’s while others do not. We also want to explore what drugs or other treatments, like what we eat and how much we move, work to delay or even prevent the disease process.
Be a Research Hero!
We need individuals with Down syndrome to join our research studies to help us gain insights, reduce risks, and improve lives. Be part of the progress to prevent Alzheimer's disease in people with Down syndrome.
Take the First Step
Make a difference. Become a research hero.
Call 913.588.0555 to talk with our team about research opportunities
Studies Dedicated to People with Down syndrome
Read about the Key differences among the current and emerging Alzheimer’s clinical trials in Down syndrome and learn about the studies offered at the KU ADRC.
Alzheimer Biomarker Consortium - Down syndrome (ABC-DS)
Study Overview: Active involvement in this observational study empowers individuals with Down syndrome to play a pivotal role in uncovering who is more likely to develop Alzheimer’s disease. Findings from this study aim to drive progress in developing treatments and potentially slowing the progression of Alzheimer’s disease.
Who Can Participate? Adults with Down syndrome who are 25 years or older.
What Are the Study Procedures? Procedures may include blood draws, MRI and PET scans, questionnaires, and cognitive assessments.
How Long Is Participation? Visits every 16 months for a total of four visits over approximately five years.
How Many Visits? A total of four study visits may be completed over 1-3 days each.
Is There Compensation? Yes
Why Is This Research Being Done? Alzheimer’s disease is highly prevalent among individuals with Down syndrome, affecting 9 out of 10 people. This study investigates why certain individuals are more predisposed to developing Alzheimer’s disease, which could inform future treatments.
ABATE
Study Overview: Many people with Down syndrome develop Alzheimer’s disease as they age. The ABATE study is a clinical trial testing an investigational vaccine to see if it slows disease progression in individuals with Down syndrome.
We aim to determine:
- If the vaccine is safe
- How the vaccine works in the body
- If it helps reduce amyloid buildup
- If it slows memory loss and cognitive decline
Who Can Participate? Cognitively Normal (CN) group: individuals with no apparent memory problems.
What Are the Study Procedures? Procedures include questionnaires, cognitive testing, ECG, MRI scans, PET scans, blood draws, and optional lumbar punctures.
How Long Is Participation? Approximately 2 years (106 weeks).
How Many Visits? Approximately 20 visits (some visits may be split into smaller sessions or combined).
Is There Compensation? Yes
Why Is This Research Being Done? Alzheimer’s disease often develops in older individuals with Down syndrome due to amyloid buildup. This study aims to test a vaccine's efficacy in slowing cognitive decline.
Brain Outcomes and Lifestyle in Down syndrome (BOLD)
Study Overview: Adults with Down syndrome will either follow a weight loss program or receive general health information. The 12-month study includes monthly virtual meetings and up to 5 visits to KU Medical Center, with no cost for participation and compensation provided.
Who Can Participate? Adults with Down syndrome aged 18-64 who:
- BMI 25 to 50kg/m2
- Can communicate through spoken language
- Have a caregiver who routinely interacts and is willing to attend study visits
- Are willing to travel to KUMC for assessments
What Are the Study Procedures? Blood draw, cognitive testing, anthropometric measures, MRI, and dietary intake assessment.
How Long Is Participation? 12 months
How Many Visits? Up to 5 visits at KUMC.
Is There Compensation? Yes
Why Is This Research Being Done? The study aims to understand how dietary changes and weight impact the risk of Alzheimer’s disease in adults with Down syndrome.
MyAlliance
My Alliance for Brain Health is a FREE program that provides regular tips, newsletters, webinars, and resources for everyone interested in brain health, Down syndrome, and Alzheimer’s prevention, as well as for caregivers or anyone with memory concerns.
Sign up for the newsletter and to learn about research
Watch Greta’s video walkthrough of the Newsletter
Weekly Webinar discussing the connection between Down syndrome and dementia
KU V-FIT Program
Virtual group fitness program for adolescents and adults with intellectual and developmental disabilities.
Program Details:
- For ages 13+ with intellectual and developmental disabilities
- Weekly 35-minute classes
- Types of exercise: Aerobic, Strength, Endurance, Dance
- Conducted over the free Zoom® video conferencing application
- Group format to promote social interaction
- Class times: Monday 4:30-5:05 pm, Tuesday 5:00-5:35 pm, Thursday 5:00-5:35 pm
- First Month FREE (enter promo code: summer)
Payment Options:
- Monthly unlimited membership: $20
- Sign up by the 25th of the month for the next month.
Technology Requirements:
- Wi-Fi connection
- Computer or tablet with a camera and a microphone
- Download the free Zoom® video conferencing application
- Email address for Zoom® link and questionnaire communication
Contact for More Information:
- Contact Jessie at jdanon@kumc.edu or call 785-764-3574
Being Proactive
Managing Alzheimer’s Risk in Individuals with Intellectual/Developmental Disabilities (IDD) is a program offered on-demand by KU Alzheimer's Disease Research Center and local partners. It provides families and professionals with information on risk factors, monitoring cognitive changes, and support strategies for individuals with IDD.
Caregiver Support Services
We offer support services where you can talk with a social worker or care navigator about memory changes or a dementia diagnosis for yourself or a loved one.
Contact Amy Yeager at 913-945-7663 or email ayeager3@kumc.edu.
Drop in during her office hours, quarterly on Tuesdays.
More information about office hours
Additional Resources
KU Medical Center Resources for Adults with Down Syndrome
National Task Group Information on Down Syndrome and Dementia
NIH Information about Alzheimer's Disease in People with Down Syndrome
Alzheimer's Association Information about Down Syndrome and Alzheimer's Disease
KCDD Behavioral Health Toolkit available in English
KCDD Behavioral Health Toolkit available in Spanish
Our Community Partners
New Research from Our Team: "With Us, Not On Us"
We’re excited to share a new publication led by our team that amplifies the voices of people with Down syndrome in Alzheimer’s research. The article, “Research should be conducted with us, not on us,” highlights how inclusion and partnership are shaping the future of brain health studies.
Explore Common Study Procedures
Study Visits and Procedures Resources
Read about the Key differences among the current and emerging Alzheimer’s clinical trials in Down syndrome and learn about the studies offered at the KU ADRC.
Contact Our Team
You can always talk with our team to learn more about research and ask any questions you might have. Just call 913-588-0555.
The CHIP team started a new Podcast in 2025, CHIP Chat! Check out the most current episode.
View our past CHIP Chat Podcasts on Spotify
For those who may not know, we are incredibly fortunate to work alongside an amazing research assistant, Greta Foye. Greta is a 45-year-old woman living with Down syndrome who is now beginning to experience changes related to dementia, and she is using her voice to make a difference.
Earlier this year, Greta co-authored a powerful paper on why individuals with Down syndrome must be included in clinical trials and why true partnership with people with lived experience is essential to making research more inclusive and meaningful. Her perspective challenges us, as researchers, to do better. You can read her work here: https://lnkd.in/ggD4wKEK
We recently learned that her paper has been nominated for the Alzheimer’s Association ISTAART Publication of the Year—in two categories: the Down Syndrome & Alzheimer’s Disease PIA and the Partnering with Research Participants PIA.
We could not be more proud of Greta. She is a leader in Down syndrome research, and she is helping ensure that her voice,and the voices of others with Down syndrome, are heard, valued, and included.
If you are an ISTAART member, please consider taking a moment to vote for her paper using the links below:
https://lnkd.in/gdMKdtAE
https://lnkd.in/gdsNKjnQ
CONEXIÓN FAMILIAR
Fecha: Miécoles 6 de mayo
Hora: 6:30 – 8:00 pm
Lugar: Down Syndrome Innovations (5916 Dearborn St., Mission, KS, 66202)
¿Quién está invitado? Todo el mundo, sobre todo familias que hablen español que tengan seres queridos con síndrome de Down a cualquier edad.Contaremos con Jaime Perales Puchalt y Kelly G Loeb del KU ADRC, para una presentación sobre nutrición.
¡Les invitamos a nuestra primera conexión familiar de 2026!
El evento será el 6 de mayo en Down Syndrome Innovations.
Regístrense para recibir recordatorios. Habrá refrigerios.
Para preguntas, escriban a CJ: cj@kcdsi.org. ¡Les esperamos!
DSI 31st Annual Step Up for Down syndrome Walk | Truman Sports Complex
Our team at the Genetic Determinants of Alzheimer’s Disease in Barcelona, Spain
2024 Golisano Health Leadership Award Recipients
On December 5, 2025, our team attended the Special Olympics Kansas Champion’s Luncheon in Topeka to receive their 2024 Golisano Health Leadership Award. The award recognizes health champions (leaders and organizations) making significant contributions to ensuring equal access to health, fitness, or wellness opportunities for people with intellectual disabilities. It is the highest honor awarded by Special Olympics to health partners.
