The Importance of Alzheimer’s Research – The DIAN Study

Editor’s Note: The Alzheimer’s Association International Conference® 2017 (AAIC®) is the largest international meeting dedicated to advancing dementia science. Follow the conference at alz.org/aaic.

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By Bob Le Roy

The Alzheimer’s Association is the largest private funder of Alzheimer’s disease research in the world. The United States and Chinese governments come first and second before us. The increased level of investment made by our own federal government is in large part due to the work of our advocates, working diligently to encourage greater investments for a research, care and support of those facing this disease each year.

The investments made by our federal government and international partners are hugely significant; however, what we do at the Association to advance research is uniquely important.

IMG_0907+(1)The Alzheimer’s Association works to find and fund the most innovative and groundbreaking studies happening worldwide. We are able to fund studies government entities cannot.

The Dominantly Inherited Alzheimer’s Network, or DIAN Network studies, is an excellent example of what the Associations research influence can do. The DIAN Network was formed to identify potential biomarkers that may predict the development of Alzheimer’s disease in people who carry an Alzheimer’s mutation. In 2012, convinced of the DIAN study’s potential to make a significant impact on Alzheimer’s disease research, the Association awarded the study the largest grant in the history of our organization.

Since then, the DIAN study has gone on to prove its potential and has received significant funding from the National Institutes of Health. It is now operating under a $45 million grant and has enrolled participants across the globe.

Grant programs like the Associations are critical driving research forward. Without private funding, DIAN could not have provided research results to continue vital, groundbreaking work.

At the Association we know that research is about more than grants and studies. It’s about people. We work constantly to connect more individuals, both healthy and those living with dementia, to trials and studies in their area. In our region, we know hundreds of individuals participating in research and, amazingly, we know seven individuals participating in the DIAN study.
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I had the pleasure of dining with the people we know here in Washington in the DIAN study recently. When I say it’s amazing we know these people, I mean it. Individuals participating in the DIAN study come from families who carry the rare, deterministic gene mutation that causes Alzheimer’s. This accounts for 1% of Alzheimer’s cases.
This is so rare, yet, we were able to connect seven
individuals and four families who share this rare connection.

You might think the meal we shared together discussing genes and testing or the many needles and lab visits they participate in was sad – it’s so unfair that so many amazing individuals were brought together this way. But what I saw during that meal was hope.

I saw a group of people determined to make a difference for themselves, for their families and for future generations who might not ever have to face this disease. I was in the presence of individuals who WILL help us find the first survivor of Alzheimer’s disease.

And while we work together to achieve or vision of a world without Alzheimer’s we will continue to provide the vital program and services those facing this disease count on every day.  Education and support groups provided in our communities are lifelines to caregivers and individuals living with dementia.

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By our efforts at the Alzheimer’s Association, each of you—all of us—can make such a difference for individuals, families, and communities across our state and beyond. Lift your voices as persons with dementia, caregivers, advocates, donors, and partners determined to realize our shared vision of a world without Alzheimer’s—and don’t be shy!

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