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The Latest Research & Medical Care from Our Down Syndrome Experts

New Clinical Trials Targeting Alzheimer’s Disease
in People with Down Syndrome

Tuesday, April 8, 2025
12pm – 1:15pm MT


GLOBAL Webinars are an important benefit for our Members. Held quarterly, these 1+ hour-long webinars cover topics across the lifespan. Webinars are FREE for GLOBAL Members and $10/webinar for non-Members. If you have a family member or dear friend with Down syndrome, this webinar is for you!

In this session, Dr. Rafii will discuss: 

  • Why people with Down syndrome are at high risk for developing Alzheimer’s disease
  • Information about how to get involved in clinical trials for Alzheimer’s disease in people with Down syndrome 

Michael S. Rafii, MD, PhD

Dr. Rafii is a board-certified neurologist, Professor of Clinical Neurology at the Keck School of Medicine and Medical Director of the Alzheimer’s Therapeutic Research Institute (ATRI).

Dr. Rafii is a physician-scientist whose research focuses on developing treatments for Alzheimer’s disease (AD) including a genetic form of AD that occurs in people with Down syndrome (DS). He is Principal Investigator of the NIH-funded Alzheimer’s Clinical Trials Consortium – Down Syndrome (ACTC-DS), an international network of over 20 expert sites conducting clinical trials for Alzheimer’s in people with Down syndrome. Dr. Rafii’s work has been featured in the New York Times, Chicago Tribune, Washington Post, Wall Street Journal and on National Public Radio (NPR).

Save The Date – Upcoming Webinars 

Tuesday, August 5, 2025 
Neurodiversity and Individuals with Down Syndrome
Nicole Baumer, MD

GLOBAL Family-Friendly Guideline

Ya está disponible la versión adaptada a las familias de nuestra innovadora Guía mundial de cuidados médicos para adultos con síndrome de Down.

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Q&A WITH OUR EXPERTS – A VALUABLE MEMBERSHIP BENEFIT

SLEEP APNEA ACROSS THE LIFESPAN
IN PEOPLE WITH DOWN SYNDROME

Q: How does one define moderate vs severe sleep apnea? What percent in oxygen saturation during OSA episodes is the average range?

A: They are defined based on the obstructive apnea hypopnea index, which is the number of obstructive episodes during sleep divided by the hours of sleep. Many patients experience drops in oxygen saturation during obstructive episodes. These drops are variable and range from very mild to severe down to 60-70%.

DOWN SYNDROME REGRESSION DISORDER: THE LATEST RESEARCH AND PROMISING TREATMENTS

Q: What age are you seeing regression symptoms starting?

A: I think that when we’ve looked at our population level data, the mean age at onset is about 18. We see a heavy clustering in the late teen years, early twenties, and the reason why we’ve come up with this particular age range is because younger than 10, the chances that this may be autism or some other biochemical or genetic phenomenon is much higher. And similarly, over 30 is where we start to kind of bridge that gap into early onset Alzheimer’s, although that is still very young. 

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Information received from GLOBAL’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. GLOBAL DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.

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