We Can Stop Alzheimer’s, but Not without You
5.4 million Americans have Alzheimer’s. Their 15 million caregivers are victims as well. The annual cost of Alzheimer’s to America exceeds $200 billion. One in three has family affected by Alzheimer’s. The numbers are staggering. Where is the outrage, where is the outcry?
Who We Are
USAgainstAlzheimer’s is a community of engaged and enraged individuals who have been touched by Alzheimer’s disease and are united by our frustration at a broken status quo. We 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.
The core of USAgainstAlzheimer’s is family members, caregivers and researchers who have seen the personal toll of Alzheimer’s and understand that the fiscal and societal costs of Alzheimer’s will devastate our nation. We have seen loved ones in the prime of their lives—many as young as 40 or 50 years old—forgetting how to eat and care for their personal hygiene. We have seen mothers with young children caring for their own mothers and fathers, with barely a moment to breathe. And, we have seen people suffer over the course of a decade or longer, slowly losing one brain cell and memory at a time.
Our Theory of Change and a Bold Operating Model
USAgainstAlzheimer’s has a bold attitude and agile operating model. We are disrupting the sluggish ‘business as usual’ pace of Alzheimer’s progress.
Our theory of change is rooted in the strong belief that we, the American people, can create the national will to prevent and treat Alzheimer’s by pressuring our political, business and civic leaders to devote the necessary resources to outcomes-oriented research and to reform the drug development systems that currently slow the development and availability of promising treatments. We call this "leadership for the cure." And it works.
This is how:
- We are demanding an aggressive, transformative federal policy agenda to stop Alzheimer’s by 2020.
- We are building an army of activists whose insistence on a cure is palpable.
- We are providing a continuous stream of simple actions activists can take to advance the movement toward our ultimate goal.
- We are working as a Network of individuals and organizations through new models of collaboration and movement-building.
- We are launching an effort through the LEAD Coalition (Leaders Engaged on Alzheimer’s Disease) to recruit at least one million people to demand that Alzheimer’s be stopped and to call for the successful implementation of the national plan.
- We are educating public officials to recognize the urgency of this quest and the horrible consequences of inaction.
- We are driving innovation through leadership and partnership to accelerate Alzheimer’s prevention, care and cure.
What We Have Accomplished
In two short years, we have achieved the following:
- Successfully persuaded the White House and U.S. Department of Health and Human Services to set a time-based goal to prevent and treat Alzheimer’s by 2025 and create a national plan to achieve that goal.
- Secured appointment as one of 12 non-governmental members of the Advisory Council on Alzheimer’s Research, Care and Services to advise on improvements to that plan.
- Leveraged personal and political relationships and a strong network of supporters to obtain commitments and proposals for an additional $169 million to fund Alzheimer’s research through National Institutes of Health and the U.S. Department of Defense.
- Successfully effected the introduction in Congress of legislation specifically aimed at accelerating the development of life-enhancing and lifesaving therapies for Alzheimer’s patients.
- Successfully advocated for the strengthening of Fast Track and Accelerated Review tools for the FDA to use for Alzheimer’s therapies.
- Established an online network of more than 60,000 individuals and the fastest-growing social media presence in the Alzheimer's field.
- Convened Leaders Engaged on Alzheimer's Disease (LEAD), a coalition of over 50 Alzheimer's-serving organizations including non-profits and for-profit companies.
- Organized ResearchersAgainstAlzheimer's to serve as the unified voice for the scientific community on the value of additional resources for Alzheimer's research.
- Helped organize a House Foreign Affairs subcommittee hearing exploring the global burden of Alzheimer’s disease.
We are moving forward with tremendous speed, success and momentum, and we are positioned to be a major catalyst in the effort to end Alzheimer’s disease. To further accelerate our progress and ensure Alzheimer’s receives the national attention it deserves, we are building networks of influencers and activists, initially in five categories: activists, women, researchers, African Americans and Hispanics. Each network includes a target audience, its own unique programming and staff support. In time, we will add other networks of affected groups.
ActivistsAgainstAlzheimer's Network builds on the energies of highly motivated Alzheimer's activists, who are on the front lines of efforts in their communities and nationally. Members of the Network will expand the movement by serving as ambassadors in their communities and bringing others into the fight to end Alzheimer's.
WomenAgainstAlzheimer’s Network gives voice to women who bear the major burden of the Alzheimer's crisis and arms women with the information and easy-to-use connections needed to be heard in Washington, in state capitals, and by industry leaders and the research community.
ResearchersAgainstAlzheimer’s increases awareness about Alzheimer’s disease and advocates for more research funding and reforms.
The AfricanAmericanNetworkAgainstAlzheimer’s engages individuals and organizations to be the preeminent voice in and for the African American community on the issue of Alzheimer’s disease and its disparate impact on African Americans.
HispanicsAgainstAlzheimer’s raises the profile of Alzheimer’s disease and it’s disparate impact on Latino’s, the most rapidly growing segment of the American electorate.
We believe the power of “US” is in the thousands of researchers, millions of families, caregivers, advocates, hundreds of companies and our public officials.
USAgainstAlzheimer’s (USA2) is a 501(c)(4) organization engaging in public advocacy, federal relations, grassroots activity and voter education.
USAgainstAlzheimer’s Network is a 501(c)(3) organization connecting networks of organizations and individuals to take action to end Alzheimer’s by 2020, while providing the general public, policy leaders and the media with vital information about Alzheimer’s disease.
USA2PAC is an Alzheimer’s-centric political action committee that contributes to the campaigns of candidates supportive of Alzheimer’s issues.
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Frequently Asked Questions
What is USAgainstAlzheimer’s?
USAgainstAlzheimer’s is a community of engaged and enraged individuals who have been touched by Alzheimer’s disease and are united by our frustration at a broken status quo. We are dedicated to mobilizing individuals to demand transformative actions to achieve the attainable goal of ending Alzheimer’s by 2020. We are family members, caregivers, and researchers who have seen the personal toll of Alzheimer’s and understand that the fiscal and societal costs of Alzheimer’s will devastate our nation. All of our efforts are based on a rejection of the status quo and a firm belief that hundreds of thousands of voices can – and will – help bring about the end of Alzheimer’s disease as we know it.
What are we up against?
Alzheimer’s disease is the 6th leading cause of death in the United States, and the only disease in the top ten with no disease-modifying treatment or cure. There are currently 5.4 million Americans with Alzheimer’s – a number that is expected to triple in the coming decades. Nearly 15 million Americans serve as unpaid caregivers to loved ones who suffer from the disease and American taxpayers spend $200 billion per year in Medicare and Medicaid related expenses on Alzheimer’s (more than 400 times the amount spent on finding a cure). If substantial progress is not made in stopping Alzheimer's, Medicare and Medicaid spending will reach $1.1 trillion in today's dollars by 2050.
How soon can we stop Alzheimer’s?
The research community believes it is possible to stop or control the disease within ten years through disciplined research that is adequately funded. To succeed, we need a political strategy that ensures that elected officials and policymakers make fighting Alzheimer’s a national priority and enact a clear plan for a cure.
How is USAgainstAlzheimer’s building advocacy networks to fight this disease?
USAgainstAlzheimer's strategy to defeat Alzheimer’s by 2020 is bold and comprehensive. The heart of our inclusive effort is a ground-up mobilized effort to demand change. We know that engaged activists are a crucial part of movement-building, and we are committed to supporting people-powered social change.
USAgainstAlzheimer’s is about the millions of Americans who quietly and anonymously suffer from Alzheimer’s. It is about the caretakers who work around the clock and witness up close Alzheimer’s painful toll on their loved ones. It is about the researchers tirelessly working to find a cure but who desperately need greater resources. It is about all of us, who – despite our pain, despite our anger, and despite our heavy hearts – know with certainty that we will live to see a day when Alzheimer’s is defeated.
Our movement is a disruptive one fueled by passion and the belief that the current lack of focus on the issue is not acceptable and must be changed. We work to raise awareness about the Alzheimer’s crisis among policymakers, candidates, and the general public. We partner with health, science, and community organizations to expand our political influence. We go to Congress and educate members on the crisis and strategies that can defeat the disease.
Together, we will spur innovations in science, industry practice and regulatory processes essential to the discovery of safe and effective therapies needed to stop Alzheimer’s.