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Promising new Alzheimer's drug leaves out people with Down syndrome

A stunning 90% of people with Down syndrome are  at risk for developing Alzheimer’s disease. And the average onset of dementia is age 53. 

"So it's a really major crisis for our families," explained Hampus Hillerstrom, the CEO of  LuMind IDSC Foundation, which works to accelerate Down syndrome research.

Now a new Alzheimer’s drug is showing promise, but there is a catch when it comes to lecanemab.

Still, Hillerstrom is hopeful. That’s because the risk of brain swelling or micro-hemorrhaging is less than Aduhelm, the controversial Alzheimer’s drug that was approved for use earlier this year.

But, he said, "The trials enrollment criteria exclude people with Down syndrome because they have a different assessment skills that are used for people with Down syndrome that have intellectual disability in addition to the dementia signs, and so they cannot be included inside the same clinical trial."

Hillerstom is hoping the drug manufacturer will conduct an additional safety study in the Down syndrome population. 

KJZZ senior field correspondent Kathy Ritchie has 20 years of experience reporting and writing stories for national and local media outlets — nearly a decade of it has been spent in public media.