I was recently invited to attend a webinar led by the Banner Alzheimer’s Institute (BAI) on Alzheimer’s and the work they do through their Alzheimer’s Prevention Initiative; The Alzheimer’s Prevention Registry.
The briefing was led by Dr. Jessica Langbaum, PhD, principal scientist at BAI, who began the discussion by sharing what led her to study about cognition, brain decline, aging and Alzheimer’s. She spoke of her grandfather who had a brilliant family life and career with Honeywell and GE, that became altered by the disease. It also led her and her family to sign up for the Alzheimer’s Prevention Registry.
The webinar highlighted the effects of Alzheimer’s as well as the importance of signing up for the Registry, that YES, I registered for. I guess a great “aha” moment was hearing that if the numbers aren’t there for research, how can funding be requested? And Dr. Langbaum is correct. How can any program hope to continue or seek funding for research if they can’t and don’t get people to at least be counted?!
As I grow in my advocacy, I have often questioned how much would I want share medically. How much would I want to know about my brain right now? I would do anything to bring awareness and research funding to this insidious disease, especially as many of you know, the challenging journey I was on with mom, but what about joining this registry?
After learning the importance of what they are trying to do, knowing that you will be signing into a very secure sight, and that if I should be asked to participate in a study or trial, I am not obligated to do so; I knew I had to sign up in honor of my mother and grandmother and be counted.
Alzheimer’s is the 6th leading cause of death that cannot be prevented, cured or treated. Every “68 seconds” someone is diagnosed with Alzheimer’s…and it is estimated that because people are living longer, the cost of care for someone with Alzheimer’s disease is projected to increase from $203 billion to $1.2 trillion in 2050!!
That is why The Alzheimer’s Prevention Registry exists. The Registry, strives to provide a platform through education, advocacy and engaging individuals 18+ or older of all races and ethnicities – with or without – a family history of Alzheimer’s Disease who are committed to ending Alzheimer’s. The Registry has been in existence since May 2002 and has a goal of registering 250,000 enrollees; 100,000 by the end of 2013.
It was brought to our attention, how like with Parkinson’s and Cancer, most people aren’t aware there are prevention studies going on for Alzheimer’s. In bringing awareness to these studies, the BAI has put a spotlight on the need for advancing research because of the barriers they are facing in recruiting people for clinical trials. There is a misconception that these trials only involve people who are ill, but the focus is aimed at looking for people who are cognitively healthy to match for clinical trials.
November is National Alzheimer’s Disease Awareness Month and National Caregivers Month, why not become part of the conversation and help spread the word about The Alzheimer’s Prevention Registry. Like the Alzheimer’s Prevention Initiative on Facebook, follow on Twitter @AlzRegistry and use hashtag #endALZnow.
So far 22,000+ people have registered to date. Why not sign up here and be counted with me!
Disclosure: The Banner Alzheimer’s Institute is a non-profit organization. I was compensated in exchange for writing this post, but the opinions and decision to join The Alzheimer’s Prevention Registry are those of the author.
CONFESSIONS OF A MASTER CAREGIVER 