A generation ago, the Down syndrome community helped scientists understand how genetics play a role in the development of Alzheimer’s disease.

Today, when more than 90% of the Down syndrome population receive an Alzheimer’s diagnosis in their lifetime, this terrible disease is a near certainty for people with Down syndrome. Thankfully, hope is on the horizon – in the form of recently-developed drug therapies that slow the progression of Alzheimer’s disease.

But in spite of the devastating prevalence of early onset Alzheimer’s disease among people with Down syndrome, and our community’s early support of research that led to the new Alzheimer’s drug therapies, those drugs are unavailable to people who have Down syndrome and Alzheimer’s disease.

In fact, researchers don’t even know if the new drugs are safe for people with Down syndrome, because no one with Down syndrome has participated in any of the many rounds of safety and efficacy clinical trials that have taken place to date.