The First Survivors of Alzheimer’s

Do you remember the first time you met someone who was a cancer survivor? Or the first time you met someone who had recovered from HIV? For my years as a neurology resident and then many years as a faculty member and researcher, I never thought I would meet an Alzheimer’s survivor — we did not know what caused Alzheimer’s, we did not know how to prevent it, and we did not have any idea what an effective treatment might look like. The new drug candidates were failing repeatedly, and it was becoming clear that our laboratory models of Alzheimer’s were not accurate models, since they predicted successes that were never achieved.

I had the honor and privilege of talking with some of the very first survivors of Alzheimer’s, going all the way back to first treatment in 2012. These are courageous, diligent, and resourceful women and men, who came with open minds and hope, and have sustained their improvements for years. They are pioneers who are continuing to change history with each new day of cognitive health. They offer hope that we can indeed reduce the global burden of dementia and other neurodegenerative conditions, and I am so glad to have met each and every one of them.

How can we find more dedicated individuals such as these? These are the very sorts of people needed to form patient-researcher partnerships to help in the development of effective treatments for the many untreatable or minimally treatable neurodegenerative diseases, from ALS to frontotemporal dementia to macular degeneration to many others. With the appropriate genetic, biochemical, functional, and mechanistic studies, we should now be able to address all of these illnesses successfully, and bring change to what has been the field of greatest therapeutic failure. Thanks to people like Kristin, Julie, Deborah, Marcy, Sally, Frank, and Edward, this goal is a major step closer to realization. My heartfelt thanks go out to all of them.