Spring 2025 IDD Newsletter

Healthy Lifestyle and Brain Health Newsletter ISSUE NO.6

Inside This Issue: • Program Mission - 2 • Opportunities to get involved - 3 • Staff updates - 6 • Dance Research update - 9 • Publications - 10

Brain Health

In 2023 the Brain Health Program was launched through the University of Kansas Medical Center Alzheimer’s Disease Research Center in partnership with the Division of Physical Activity and Weight Management. The goals of the program are: • Increase our knowledge of Alzheimer’s Disease and its relationship to Down syndrome and other intellectual disabilities • Examine how energy metabolism contributes to brain aging • Test the therapeutic potential of manipulating energy metabolism for the prevention and treatment of Alzheimer’s disease in individuals with Down syndrome and other intellectual disabilities • Offer clinical trials related to Alzheimer’s disease for individuals with Down syndrome

Check out this link to learn about the differences among Down syndrome and Alzheimer’s disease clinical trials:

kuadrc.org/4dHuXDC 2

KUMC Research Study

CHEF-ID We are offering a research study that provides weight management through healthy eating, physical activity and cooking skills with motivational messaging and 1 on 1 coaching

RESEARCH GROUPS

PARTICIPANTS NEEDED

Participants will be randomly assigned to one of two groups Group 1 - Stoplight meal plan with motivational messaging Group 2 - Stoplight meal plan with in-person healthy cooking classes

Young adults with intellectual disability (ID) Ages 18–35 Parent/caregiver to serve as study partner Attend monthly remote check-in’s with coaches Commit to a 24-month research study

ENHANCED STOPLIGHT DIET

PHYSICAL ACTIVITY

MOBILE HEALTH TECHNOLOGY

Both groups will utilize and learn the enhanced stoplight diet. This healthy eating program promotes the use of portion controlled meals and shakes with lots of fruits and veggies!

All participants will be asked to engage in both aerobic and resistance training to reach their exercise goals!

Exercise equipment and videos will be provided.

All participants will be provided with iPads, activity watches and Bluetooth scales to self monitor and communicate with their health coaches!

CONTACT

785-764-3770 ChefId@kumc.edu

https://ebl.ku.edu/chef-id-study

Check out our research study for young adults with an intellectual disability who are looking to get healthy and lose weight!

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KU

V-FIT

Program

KUMC’s Division of Physical Activity and Weight Management offers a virtual group fitness program for adolescents and adults with intellectual and developmental disabilities.

Program Details Created for adolescents and adults with an intellectual and developmental disability ages 13+

Weekly 35 minute classes

Classes taught over the free video conferencing application Zoom®

Group format to promote social interaction

Types of exercise: Aerobic, Strength, Endurance, Dance based

$20 Monthly Unlimited Membership

Current class times are Monday 4:30-5:05 pm and Thursday 5:00-5:35 pm New Class: Tuesday 5:00-5:35 pm

Sign Up

FREE- Try 1 weekly class for a month Select 1 month Trial and enter code: Summer

For questions and more information please contact Jessie at: Visit kuadrc.org/vfit

Website

jdanon@kumc.edu

785-764-3574

Exciting news! We are offering FREE weekly virtual exercise classes for anyone with an intellectual disability 13+ for the months of June and July!

Scan the QR code below to sign up or reach out to Jessie to learn more!

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Brain Outcomes with Lifestyle Change in Down Syndrome

kuadrc.org/boldstudy

HELP FIND A CURE

WHAT WE NEED

Most people with Down syndrome experience the brain changes of Alzheimer’s by the time they are 40 and develop memory problems after the age of 50. Help unlock clues that may lead us closer to a cure.

We are looking for adults with Down syndrome to join a research study to help us learn how changing what someone eats and what they weigh impacts their risk of developing Alzheimer’s disease.

WHAT’S REQUIRED

TIME COMMITMENT

COST

Adults with Down syndrome will either follow a weight loss program or get information about how to improve their overall health.

The study is 12 months long and includes monthly virtual meetings and up to 5 visits to the University of Kansas Medical Center.

There is no cost to join the study, and participants will be compensated for their participation.

BE A RESEARCH HERO. JOIN TODAY. VISIT kuadrc.org/boldstudy OR CALL 785-764-3574

Check out our research study for adults with Down syndrome who are looking to get healthy!

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Staff Travel Updates Our staff has been busy this season traveling to conferences around the world to learn and share about the work we are all doing.

Lauren, Amy, Julianne and Greta traveled to the “Autosomal Dominant Alzheimer’s Disease: Down syndrome and Alzheimer’s Disease” conference in Barcelona, Spain to give presentations on their recent work.

Lauren and Julianne gave presentations on how heart health may influence progression of Alzheimer’s disease. Amy presented her work on caregiving for people with dementia and Greta participated in a panel about self advocates in Alzheimer’s disease research. We're grateful for the chance to share our work with the international research community—and even more thankful to the participants and families who make this research possible. Thank you!

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Greta in Spain!

My name is Greta Rae Foye. I just came back from Spain with my mom and had a great time. The trip to Spain went smoothly and well organized. The weather in Spain was really nice while we were there.

It was a major time change in Spain which was confusing – but once you get a handle on it, it felt normal. When you go to historical landmarks, get there early to beat the crowds and so its not too hot. I was on the panel and I was not nervous at all.

I’m good with large groups. When I was on the panel, I nailed it. I talked about that I did some Kansas City developmental disability’s counsel stuff. Research is always very important. It is a to find a cure for things too.

Always ask questions first before you are in one of the studies. When you want to have dinner, double check on dinner time in Spain because they eat late there. Exercise is very important, like walking and running.

But if you are tired catch a cab too!

good way

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Staff Travel Updates Brian, Jessie and Joe traveled to the American College of Sports Medicine Annual Meeting in Atlanta, GA to give a presentation titled ‘Bridging the Gap from Clinical Trials to Community Programs: Advancing Inclusive Physical Activity Opportunities for Individuals with Intellectual Disabilities’. They talked about how we are using what we learn in our research studies to develop community programs that anyone can join. One example of this is our KU V-Fit exercise classes.

These were developed because people wanted to keep exercising even after they were done with a research study!

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DANCE-DS Some of you may have participated in Julianne’s Dance-DS research study.

Check out some of the findings from your participation!

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Publications: Brain Outcomes with Lifestyle Change in Adults with Down Syndrome: Rationale and Design for a 12 Month Randomized Trial This publication discusses the methods and rationale we use for the BOLD study. We are examining how weight loss and dietary intake may impact the risk of Alzheimer’s disease in adults with Down syndrome.

Click on the link to learn more!

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Publications: The association between cardiorespiratory fitness and resting-state functional connectivity in adults with Down syndrome Resting-state functional connectivity (FC) of the default mode network (DMN) is linked to Alzheimer's disease in people with Down syndrome (DS). In adults without DS, cardiorespiratory fitness is associated with DMN FC; however, this has not been unexplored in DS. This publication discussed that higher levels of fitness were associated with improved connectivity of certain brain regions indicating better brain health.

Click on the link above to read more!

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THANKS FOR READING! For any additional comments or questions reach out to healthylifestyles@kumc.edu