Hannah Richardson lives in St. Louis and is 25, or in her words, “currently 14 years away from my age of onset “ for Alzheimer’s disease. Her family has a rare genetic form of the condition that impacts people in their late 30s and early 40s.
She spoke about her family’s history and how it has motivated her to get involved in research and clinical trials.
Missouri Health Talks gathers Missourians’ stories of access to healthcare in their own words.
Hannah Richardson: My family has a pretty unique experience with dementia and Alzheimer's. We have a rare genetic form of Alzheimer's. My family, our age of onset for symptoms is 39 years old.
It has been in my family for generations. My great-grandmother was the first to pass in the 1950s. Four of her five children died of it before the age of 42.
My mother is 44 and living with Alzheimer's currently in the late stages, and her brother passed two years ago at 44.
So, me and my two siblings have a 50% chance of inheriting the same gene that my mom has. My family got involved with clinical research at WashU back in the early 2000s through the DIAN trials. My mom and uncle were in the clinical study since 2010.
Then they started a new trial in 2025 — the Primary Prevention Trial — where they're trying to see if we can treat amyloid plaque buildup in the brain 15, 20 years out from age of onset, to see if we can slow progression, or maybe even halt disease progression in people.
With me having this, potentially having this gene — we create this really unique scenario where we're participants who know we could have Alzheimer's, so they can get, like, set data from us.
So, last year, I was the first participant in the world actually, to sign on to this trial. Once a year, I get MRIs, PET scans, I get a lumbar puncture, I get a dose every three months of the tested medication.
I think that research is what's going to cure this disease, so I've happily dedicated anything I can to it. Just like my mom and my uncle and the rest of my family.
And I have two younger siblings, they're also enrolled to start being in the trial, as well. So just trying to give back any way we can to help progress finding a cure for Alzheimer's.
My mom is the bravest person I've ever met. She lights up a room, she's funny, she's kind. When she found out she had this diagnosis, I feel like most people would just, like, lay down and let that take rein of their life.
Getting a terminal diagnosis changes the trajectory of everything you do, everything you will do. My mom jumped into advocacy work. She started volunteering with the Alzheimer's Association. She continued being in research. She took that and it was like, “I'm gonna take this bad news and do whatever I can to help, if not me, my children.”
Being like, 11, 12, years old, and seeing that was the biggest inspiration. It's why I work in healthcare. It's why I do research. It's why I'm here today advocating because it's the least I can do to honor her and all the work that she's done. She is truly my hero.
Alzheimer's is everywhere, and it's gonna continue to be everywhere. Every corner of your life — it will be there. It's impacting everyone.
There are over 12 million Americans impacted by this. 7 million today living with dementia or Alzheimer's, and I want legislators to realize that this is not going away. It's going to continue causing a health care crisis, especially with health care funding and Medicaid in America.
If we do not support our American families suffering from this, it's only going to continue to grow, and if we don't support research funding, we're never going to find a treatment or a cure, and that's how we stop it. It’s how we support Americans.
