Excitement is growing here at Adira for Neuro Health Equity: Let’s Talk—coming up on April 15.

It’s an event meant to stir up conversation, ideas and create real programming at Adira that will make a difference for people of color with neurodegenerative disease.

We want people impacted by our five disease communities, as well as caregivers and professionals to come share your experience and help design solutions alongside other people impacted by and working in neurodegenerative disease for this FREE, virtual event. Your lived realities will shape the work to come.

As a preview of the event, we are highlighting one such lived reality shared with us through our StoryCorps project.

From caregiver to genetic counselor

Sophia RodriguezSophia Rodriguez became a genetic counselor specializing in Alzheimer’s disease research in the Latino population after learning her mother had a familial form of early-onset Alzheimer’s disease. As part of Adira’s StoryCorps project, Sophia spoke with her sister Ericka about living with and caring for a mother who began showing signs of Alzheimer’s in her late 40s.

From Sophia

[content edited slightly to adapt audio to text]

I couldn’t accept that she was going through dementia, going through all of these symptoms and no one could tell me why. She was too young for this. I started doing my own research and I insisted that the doctors do genetic testing. I narrowed it down to three genes. At the time, it was a very expensive test.
A resident was shadowing my mother’s doctor at the time. She heard me talking about the genes and how the doctor was reluctant to test. She came in later on, and asked, “What genes were you talking about? Write them down and I will see what I can do.”
I had to choose one gene to test out of the three. I said Presenilin 1. And that was the one that came back positive for a mutation that was causing her early-onset Alzheimer’s.
No one ever called me to let me know that the test went through. Only going through [my mom’s] file months later, did I see that Presenilin 1 was tested and she did have a mutation. It said: Genetic counseling is recommended for the family member.
I was like, what is going on here? I already knew at that point what it meant for me, and for my family, my sister, my brother, my cousins. Her siblings had passed away [early] from heart disease. What if they were positive for the Presenilin 1 mutation?

You can listen to the whole conversation to hear more about Sophia and Ericka’s experience with familial Alzheimer’s here.

We hope to share and hear more experiences like Sophia’s on April 15.

Join the guestlist

Want to know more?

health equityAccording to LatinosAgainstAlzheimer’s:

“Latinos are 1.5 times more likely than non-Latino whites to develop Alzheimer’s disease, in part, owing to increased risk of high blood pressure, heart disease, diabetes, and stroke—all additional risk factors for Alzheimer’s and other dementias. Furthermore, research has found that symptoms of Alzheimer’s appear almost seven years earlier in Latinos than in non-Latino whites.”

Special guest Jason Resendez will share more such data impacting people of color with neurodegenerative diseases at Neuro Health Equity: Let’s Talk.

We are holding this event because we know our solutions must be informed by your real experiences with why that might be and how you think things could be better.

Register here. And help us spread the word—tell your friends and loved ones.

Support this event! Your donation will amplify voices that go unheard.