Bea Lerner, Trish Vradenburg's mother, called at 3:00 AM one morning to complain about a strange man in her house. Trish and her husband, George, immediately went there to find only one man in the house, her husband. When asked about a strange man, Bea pulled them aside and pointed to her husband, saying "That's the strange man; he's nice but I don't know him."
After that, the powerful pull of the Alzheimer's downward spiraling trajectory never let up. It was then and there that the Vradenburgs vowed to find a way to stop this disease in its tracks and to do it quickly. They are driven by the passion that comes from losing a shared mother to Alzheimer's.
Alzheimer's disease is a type of progressive dementia that causes problems with memory, thinking and behavior. There is no cure. It's the great public health crisis of our time. According to the Alzheimer's Association, more than 5 million Americans have the disease. Deaths from Alzheimer's increased by 68 percent from 2000 to 2010. This compares to decreases in the number of deaths from breast cancer (-2 percent); prostate cancer (-8 percent); heart disease (-16 percent); stroke (-23 percent); and HIV (-42 percent) during the same time period.
In addition, the Alzheimer's Association says that Alzheimer's is the costliest disease in the nation. Yet research dollars allocated by the National Institutes of Health are tiny and would be laughable if it weren't such a serious illness - especially in comparison to money allocated to other major illnesses.
NIH reports that in 2013 more than $5 billion was spent on cancer research; more than $1.6 billion on heart disease research; and nearly 2.8 billion for research on HIV/AIDS. The amount spent on Alzheimer's research was a mere $450 million. Furthermore, USAgainstAlzheimer's reports that for every dollar Medicare and Medicaid spend on Alzheimer's care, less than one penny is spent on research. Put politely - this makes no sense; less politely, it's insane.
There is hope on the horizon, however. It emanates from a remarkable association called USAgainstAlzheimer's - or USA2 as it's sometimes called - founded in 2010 by millionaires George and Trish, initially largely with their own money, though now drawing on many other sources. It is a 501(c)(3) and 501(c)(4) organization bringing effective leadership, collaborative advocacy and strategic investments to the fight to stop Alzheimer's.
George describes the organization as a community of "engaged and enraged" individuals who have been touched by Alzheimer's disease and are united by their frustration at a broken status quo. They are dedicated to mobilizing individuals to demand the urgency, passion and commitment needed by our political, business and civic leaders to achieve the goal of ending Alzheimer's by 2020.
George and Trish are passionate about their goal. Although many of us have heard the basic facts and figures about the number of people who have Alzheimer's and the number projected to get it, George has a stark, no nonsense way of getting that point across. At the second annual Alzheimer's Association Gala he asked the people in half of the room to stand. Then he announced, "All of you will have Alzheimer's by the time you're 85." Then he directed his gaze toward those still sitting and added, "and all of you will be taking care of them."
USA2 is demanding an aggressive, transformative federal policy agenda to stop Alzheimer's. It's building an army of activists whose insistence on a cure is palpable. It is also educating public officials to recognize the urgency of this quest and the horrible consequences of inaction.
Among its many major accomplishments are the following:
- Successfully leveraged personal resources and relationships to advocate for increased federal funding for Alzheimer's research, resulting in more than 100 million in additional Federal research funding.
- Demanded and obtained a National Plan to Address Alzheimer's and a goal and specific research milestones designed to stop the disease by 2025.
- Mobilized corporations, researchers, caregivers, activists, influencers and minorities in the fight to find a cure through large-scale, change-oriented networks and coalitions.
- Engaged in global advocacy by partnering with the British government to put Alzheimer's and dementia on the G8 agenda.
There's a petition on its website (USAgainstAlzheimers.org) that tells our political leaders that the same insufficient "business as usual" response is not enough to end Alzheimer's. There is also an impressive 47-page all-inclusive Tool Kit for activists. It's a detailed, step-by-step guide to help people learn how to organize others, pressure policymakers and talk to the press about the urgent need to make stopping Alzheimer's a national priority.
USA2 has an affiliated PAC that has contributed more than $200,000 to political figures dedicated to advancing research on Alzheimer's. It also has six affiliated Networks of influencers and activists who are ensuring that Alzheimer's receives the national attention it deserves. These include Activists Against Alzheimer's, African Americans Against Alzheimer's, Clergy Against Alzheimer's, Latinos Against Alzheimer's, Researchers Against Alzheimer's, and Women Against Alzheimer's.
The Vradenburgs have long been dedicated members of Washington's civic and philanthropic community. Among his extensive qualifications for leading this fight, George serves on the Advisory Council on Alzheimer's Research, Care and Services established by the National Alzheimer's Project Act, is a member of the World Dementia Council, and previously served on the U.S. Commission on Long Term Care. Trish is an activist, journalist, playwright and novelist. In addition, she was a speechwriter in the US Senate and wrote for several television shows, including Designing Women and Kate and Allie.
In the last two years alone the Vradenburgs have spent more than $2 million of their own money on USA2. This amount covers all its operating costs, and then some. Consequently, every dollar raised goes directly to the cause.
Nancy Pelosi says the Vradenburgs are "human catalysts - to bring everybody together. They are relentless, they are persistent and they are dissatisfied." Trish adds, "We will go away when Alzheimer's goes away."
To contribute to USAgainstAlzheimer's go to its website and click on the red "DONATE" button at the top right.
Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, available on Amazon. Her website contains a wealth of information for Alzheimer's caregivers.