At 38, I want to believe I have many fruitful years ahead of me and plenty of life experiences to look forward to. Yet, after being touched by Alzheimer's disease, I realize I can't afford to stand on the sidelines as this disease may one day be in my future. My maternal side is haunted by Alzheimer's: My grandmother, two great aunts, an aunt and cousin have all succumbed to the disease. And I worry my mother, and possibly myself at some point, will be the suffer the same fate.
Alzheimer's is not a normal part of the aging process. In North Carolina alone, there are 150,000 individuals who currently suffer from the condition. This disease is a thief of the worst kind: Robbing memories of your own children. Wiping out the loving remembrances shared over a lifetime of marriage. Making you feel lost in your daily surroundings. For the more than 5.2 million Americans currently living with Alzheimer's - and for their families - this is reality.
As World Alzheimer's Day approaches on Sunday, it is a somber reminder that we must do more to find an answer to this disease that steals life from our mothers and fathers, grandmothers and grandfathers, aunts and uncles, sisters and brothers and impacts more than 15 million caregivers in the United States. If we don't make this fight a priority, it is conceivable that one day, virtually everyone will be damaged in some way by Alzheimer's.
As someone who has been personally touched by the disease, I have seen how it devastates entire families. Trying to find a breakthrough in patients who already have symptoms hasn't worked. However, I have hope. Hope in new prevention trials focused on detection and treatment prior to when symptoms occur that can be found through the Alzheimer's Prevention Registry.
Yet, we can't move forward on this research without a very important piece of the puzzle: volunteers. What's missing are people who are willing to step up and move this research forward. One of the biggest misconceptions about clinical trials is that researchers mostly study people who already suffer the disease. On the contrary, much of the Alzheimer's research on the horizon needs individuals without symptoms. And, because most trials require specific criteria for participation, scientists must consider thousands of potential participants, which can delay research significantly.
The Banner Alzheimer's Institute created the Alzheimer's Prevention Registry ( www.endALZnow.org) to recruit individuals for research and clinical trials to start this crucial work without delay. There are several studies currently enrolling and others launching soon that will need thousands of volunteers to get off the ground. Registry volunteers will receive updates about the latest Alzheimer's research happenings, scientific advances and overall brain health.
What can you do to help? As a healthy person with no symptoms of the disease, one of the easiest ways to get involved is enrolling in the registry and exploring possibilities of participating in this exciting new frontier of Alzheimer's research. Take one minute out of your day to join me in signing up.
From birthdays and graduations, to weddings and children, our lives are filled with precious memories. But Alzheimer's has the power to erase them. Let your voice be heard. The memories you save could be your own.
Amy Shyshnyak is a resident of Raleigh.