World Alzheimer’s Day — finding answers on advocacy and awareness

Once a year, the world, politicians and citizens, alike, acknowledge the impact of Alzheimer’s disease and the toll it takes on populations worldwide. On this World Alzheimer’s day, the thought of ourselves, our families, our collective memories lost to this neurodegenerative disease, are recognized. 
However, for more than 5 million Americans and their families, this annual event simply highlights the reality that they face each and every day. For some patients, those who’ve seen the full extent of how much Alzheimer’s can take, it may be the only truth that they know. So this year, I’d like to remind us all what the true meaning of World Alzheimer’s Day is really about.
It’s a day of awareness, engagement, and advocacy. With so many Americans affected by the disease, it’s likely that you not only know of Alzheimer’s, you also know someone whose life it has taken. Recent advancements in science, treatments and care have shown promise, and their successes mark great progress for the research community working tirelessly behind-the-scenes. Not only has this led to a better quality of life for patients and families, it is has also brought the world one step closer to a cure. 
Research has led to the discovery of new biomarkers that can help trace the origins of the disease, and multi-site clinical trials nationwide are helping researchers understand what directions show the most promise in treatment of Alzheimer’s. 
The successful search for a cure lies in the connections between teams of researchers, between academia and pharma, between government and private sector and, importantly, between patient, scientist and doctor.
We now have the technology and tools to bring efforts and information together in a usable way. The scientific community of Alzheimer’s researchers is remarkably cooperative.
There are multi-site/Big Data/collaborative models already in place. Global efforts, such as GAAIN and ADNI and the brain mapping projects led by the University of Southern California’s Laboratory of Neuro Imaging (LONI), have helped us understand the trajectory of the disease, where and what it does to the brain, and they’ve even marked great advancements in treatment by providing visual results of ongoing changes within the brain. The battle against Alzheimers Disease can only be won by sustained collaborative effort.
But the sad fact is that more than 5 million Americans are currently suffering with Alzheimer’s, and even though the American public and politicians agree that it should be at the forefront of research into disease, government organizations only allot a small fraction of resources to the study of Alzheimer’s.
In a recent survey conducted by the Mayo Clinic, Americans were questioned to take a pulse on America’s health opinions, behaviors and prospects for future advancement — what researchers discovered, however, was that whether red or blue, 95 percent of all Americans agreed healthcare is a pivotal topic, and the three most important concerns were for cancer, obesity, and neurological health.
For today, politicians agree, but still research labs nationwide are suffering from severe budget cuts and underfunding. In fact, in a recent breakdown by the U.S. Department of Health & Human Services, it was estimated that of the 265 areas of research, Alzheimer’s and related forms of Dementia only receive less than one percent of the available funding.
So this year, World Alzheimer’s Day is going to be about awareness, engagement and advocacy — but not just about the disease. Instead, today I’d like us to talk about the systemic obstacles that are impeding the search for a cure. I’d like us, today, to talk about encouraging our elected officials to make a real difference, a serious commitment and the needed resources to cure this disease.
The economics of this disease are staggering, not just for the families that deal with it on a personal level, but as our society ages, the costs to our nation in care and support of those suffering from Alzheimer’s will reach over 1 trillion dollars by the year 2050! Investing research money now has real and positive economic consequences and failure to act will be enormously expensive. 
Listed as number 50 on the U.S. government’s priority list of federally-funded research into disease, it is important that today be about advocacy— that today we stand together to let the world know how far we’ve come, but also how far we plan to go. 
What the Alzheimer’s and research communities really need are real funding, real public discourse, and real initiatives that have more than 5 million Americans interests at heart. 
And with the need for more funding, so too comes a need for commitment. Patients, family members, physicians and researchers — these communities need to stand together, unified and engaged in conversations and participation in research. Only together can we ever hope to find a cure for this disease, and only together can we ever truly hope to heal.
Arthur Toga’s is a professor at Keck School of Medicine at the University of Southern California. Toga’s research focuses on neuroimaging, informatics, mapping brain structure and function, and brain atlasing. He has developed multimodal imaging and data aggregation strategies and applied them in a variety of neurological diseases and psychiatric disorders.

The views expressed by contributors are their own and not the views of The Hill.

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