University of Arizona Down Syndrome Research Group

05/23/2025

When Jamie Edgin moved to Virginia Tech, she decided that it was time to dive full force into Applied Psychology -- digging into her roots as a developmentalist and assessing the needs of what research is lacking that will allow her to make the biggest difference in the final years in this career. Drum Roll: It's sexual abuse prevention and supporting better inclusion of people with developmental disabilities in all aspects of that process. Here is the new website to convey the new focus.

Check it out:

Jamie Edgin's Memory Development and Policy Lab at Virginia Tech works at the intersection of disability advocacy, policy, and memory science to translate the best practices for assessment and education into better procedures and policies for full inclusion and equity for all children in school, med

01/08/2025

Exciting news! 🥳 On December 4th, 2024, the Department of Labor (DOL) issued a Notice of Proposed Rulemaking (NPRM) that would phase out the practice of paying people with disabilities subminimum wage under Section 14(c) of the Fair Labor Standards Act.

👉 NDSS, in partnership with the National Down Syndrome Congress, developed a toolkit to help individuals with Down syndrome and their families submit comments in support of this rule. Click the link below to learn how to submit comments!

ndss.org/14cnprm

12/29/2023

As of August 2023, This research group has moved to Virginia Tech. Follow Dr. Edgin's work there.

08/07/2023

This is the last week to order your 2023 SANDS Walk for Down Syndrome at our early bird pricing. After the 12th, prices go up to $20 per shirt!

You can order your shirt while registering for your favorite team! And as always, shirts are free for individuals with Down syndrome who register for the walk.

www.ds-stride.org/sandswalk

08/06/2023

Our colleague Dr. Dan Combs MD at the UA is studying how people with DS can make decisions about research participation in medical studies. This is a one time assessment and participants are compensated.

06/29/2023

We are spreading the word about our last swim camp, which has openings!

FREE Swim Study for Sleep & Memory in Individuals with and without Down Syndrome - Summer 2023: The University of Arizona Memory Development & Disorders Lab is hosting a FREE series of two-week swim camps in June & July to investigate how exercise impacts sleep and memory in people with and without Down syndrome. Individuals with Down syndrome ages 6-25 and neurotypical children ages 6-12 are eligible for the study. The study will consist of a few in-lab memory games, wearable watch for sleep, and 8 group swim classes at the Campus Recreation Center over two weeks, either at 5:00-5:30 of 7:00-7:30 PM. Participation in the study is compensated, registration for swim camp is subsidized, and parking is included. For more information, please call or email the study coordinator, Alison Luongo (520-261-2152) at alisonluongo@arizona.edu

04/17/2023

FREE Swim Study for Sleep & Memory in Individuals with and without Down Syndrome - Summer 2023: The University of Arizona Memory Development & Disorders Lab is hosting a FREE series of two-week swimp camps in June & July to investigate how exercise impacts sleep and memory in people with and without Down syndrome. Individuals with Down syndrome ages 6-25 and neurotypical children ages 6-12 are eligible for the study. The study will consist of a few in-lab memory games, wearable watch for sleep, and 8 group swim classes at the Campus Recreation Center over two weeks, either at 5:00-5:30 of 7:00-7:30 PM. Participation in the study is compensated, registration for swim camp is subsidized, and parking is included. For more information, please call or email the study coordinator, Alison Luongo (520-261-2152) at alisonluongo@arizona.edu.

03/20/2022

HAPPY WORLD DOWN SYNDROME DAY!

We are running inclusive swim camps for children with Down syndrome this summer in partnership with the UA recreation center!
Exercise, Sleep, and Memory Study at the University of Arizona: The Memory Development & Disorders Lab is recruiting children with Down syndrome and neurotypical children to participate in a two-week swim camp at the Campus Recreation Center to evaluate how exercise impacts sleep and memory (scholarships and discounts available). Swim camps will include a small group of participants, with and without Down syndrome to maximize inclusivity. Participants will engage in visits at the research lab two weeks before the swim camp starts to complete some brain games. Participants will also wear a FitBit-like watch to track sleep and activity, as well as wear a heart rate monitor at least once during one of their swim lessons. Swim camps are available throughout the summer every two weeks, following the TUSD summer schedule. Participants will be compensated. Registration will begin in April. To be placed on the interest list or have questions, please email alisonluongo@email.arizona.edu

AGES 7-17 years

09/19/2021

The Down Syndrome Research Group at the University of Arizona (PI Jamie Edgin) is seeking participants for an online research study about sleep and memory:
This research is a pilot study that will test new memory assessments that are a part of a study looking at the relationship between sleep and memory and how exercise impacts these mechanisms in atypical development, particularly in children with Down syndrome. This study will include individuals diagnosed with Down syndrome in addition to typically developing individuals. This first portion of the study is to test the cognitive outcome assessments only.

If your child participates in this study, you and your child will be asked to attend four testing sessions, sometimes over Zoom, across a two-week period. You will have a wrist-worn monitor and their respective sleep diaries sent to you one week prior to your first visit. This device should be worn on your child’s wrist for the duration of the study, as a week prior to the first visit (two weeks total). We will also send you a variety of questionnaires to complete, along with copies of the consent form and PHI. We will also ask you to provide your child’s height and weight. We will provide you with the postage to return the materials.

During the online sessions, your child will engage in a variety of memory assessments. A short IQ assessment will also be completed during one of the testing sessions. We will ask you to fill out some questionnaires about your son/daughter’s behavior and daily living skills. As the parent or legal guardian, you will also be interviewed regarding your child’s behavior and daily living skills.

Participation in this study will last for two weeks. The first session will be scheduled either in the morning, 2-3 hours after your child normally wakes up, or in the evening, 2-3 hours before they normally go to sleep. The follow-up session will occur 10-12 hours later, either 2-3 hours after your child normally wakes up (if their first session was in the evening) or 2-3 hours before their normal bedtime (if their first session was in the morning). The next two sessions will follow the same scheduling patterns, separated by one-week. You will be provided with a schedule from Alison Luongo, the project coordinator.
For more information, contact Alison Luongo, a Clinical Psychology & Neuropsychology Graduate Student, at (469) 323-8722 or alisonluongo@email.arizona.edu. You can enroll in this study from any UA location.

05/18/2021

Please join us for this panel discussion regarding abuse prevention in Arizona schools.

Join us for a panel discussion on preventing sexual abuse in Arizona schools, especially abuse of students with disabilities.

04/30/2021

A virtual event this Tuesday

After registering, you will receive a confirmation email containing information about joining the webinar. Questions? Contact Zenya Weatherall at [email protected] or (480) 256-9717.

04/28/2021

My colleagues and I at the University of Arizona (PI Dr. Dan Combs) are seeking participants for a clinical trial of medications to treat obstructive sleep apnea in children age 6-17 with Down syndrome.
The study is looking at the use of the combination of atomoxetine (a medication approved by the FDA in children for the treatment of ADHD) and oxybutynin (a medication approved by the FDA in children for overactive bladder). These medications have been shown to treat obstructive sleep apnea in a small study of adults without Down syndrome. These medications are thought to treat obstructive sleep apnea by increasing airway muscle strength, which is known to be lower in children with Down syndrome.
The clinical trial will involve completing a total of 3 sleep studies over 3 months and taking study medications for a total of 2 months.
Children may be eligible if they have a diagnosis of Down syndrome (trisomy 21, but not translocation or mosaicism) and do not have any of the following:
-currently using and unable to discontinue PAP therapy
-premature birth < 37 weeks estimated gestational age
-seizure disorder requiring current use of medications
-untreated or inadequately treated hypothyroidism
-history of current, untreated depression
-history of liver disease
If you would like more information about the study, please contact Silvia Lopez at slopez1@arizona.edu for further information. Participants will be compensated for their time. This study has been approved by the University of Arizona Institutional Review Board. Please share!