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.
Our community petition is raising awareness of this inequity with the hope that changing the playing field for people with Down syndrome in respect to Alzheimer’s disease will have a permanent effect on our community’s access to future breakthrough therapies for all diseases that impact people with Down syndrome.
As the community and the wider public come to understand the barriers that face people with Down syndrome and Alzheimer’s disease, it is gratifying to see the media paying attention to this important issue.
June 2024
Down syndrome community will see a clinical trial for Alzheimer’s drug
LuMind IDSC
October 2023
Down syndrome families’ fight for access to Alzheimer’s trials, treatments
Reuters
September 2023
People with Down syndrome deserve access to Alzheimer’s treatment
OpEd, The Boston Globe
May 2023
Clinical trials for Alzheimer’s treatments need to include people with Down syndrome
First Option, STAT
March 2023
Alzheimer’s meds are here. But for the Down syndrome community, it’s still the 1980s
Fierce Biotech
We invite you to learn more about the topic and discuss DS-AD with your loved one’s physician.
Resource List:
Learn more about the barriers individuals with Down syndrome face in accessing the newest breakthrough Alzheimer’s drugs.
Ready to get into research? Learn about current research studies taking place now.
