Alzheimer's Prevention RegistryLast week I joined a webinar hosted by the Banner Alzheimer’s Institute. The purpose was to introduce more people to a research project Banner has set up: the Alzheimer’s Prevention Registry. Dr. Jessica Langbaum led the webinar and began by sharing her personal connection to the cause: her grandfather battled Alzheimer’s and she watched him evolve from a brilliant engineer to a man who was a shell of his former self. I’ve been there, watching that sort of change from the sidelines, and it is brutal. I instantly connected with Dr. Langbaum’s passion as she explained the registry.

It’s why I joined the registry. I hope after you read more, you will too.

Some of you who have read my blog for a while may remember when my grandmother, Millie, was diagnosed with melanoma. It was surreal to be dealing with both Alzheimer’s and cancer and yet something about her cancer brought her mind into sharp focus. Millie’s father had what the family, sadly, referred to as “cancer of the everything.” He immediately sought out treatment that also involved being a part of research. Memorial Sloan-Kettering was where he spent many months. After her father’s death my grandmother sent a check to Sloan-Kettering cancer research every month.

When the melanoma presented on Millie’s arm and the doctors informed her that it was an incredibly rare presentation, her instant response was to tell them to cut it out and study it and help other people. That is who Millie was at her core – a scientist, a giver, a researcher in search of answers.

I’ll never forget Millie fading into a lucid moment one night after a particularly hard afternoon of sundowning. She collapsed into my arms and cried, wailed, it was so upsetting to suddenly be aware of what Alzheimer’s was doing to her. “Do they know why this happens?” Those were the kinds of questions she asked within that window.

We don’t know.

Someone is diagnosed with Alzheimer’s every 68 seconds. Alzheimer’s is the only top 10 cause of death that can not be prevented, treated, or cured.

This is where the Alzheimer’s Prevention Registry comes in. It is an online community of people ready to be involved in studies to help stop the disease. Essentially it is us, stepping forward, and making ourselves available. Signing up is easy: you provide a contact email, then provide basic information (your name, your birth year, zip code, if you have a family history of dementia or Alzheimer’s) and that is it. There is no health information stored on the site.

What happens next: based on information you provided, you may get matched to be asked to participate in a study. There are several national Alzheimer’s studies happening within the next year so there is a good chance you may be needed.

Signing up doesn’t commit you to anything. You are not required to participate in a trial or study.

[Tweet “Find out why Dresden joined the Alzheimer’s Prevention Registry #EndALZnow”]

This is families, communities, caregivers, strangers – collectively stepping forward and volunteering to help find a cure for a disease that has taken too many from us. If you are looking for a way to get involved with National Alzheimer’s Awareness, consider THIS a gift to many.

Community science is awesome. Community science for a cause and for possibly a CURE is game changing.

{Disclosure: The Banner Alzheimer’s Institute is a nonprofit organization. I was compensated for my time to attend the webinar. I joined the registry readily and I sincerely hope you will too.}

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