GOLD2023

UsAgainstAlzheimer's

aka UsAgainstAlzheimer's   |   Washington, DC   |  https://www.usagainstalzheimers.org/

Mission

UsAgainstAlzheimer’s exists to conquer Alzheimer’s disease. We take on the toughest problems as we bring all of “Us” together to break down barriers to equitable brain health; advocate for research that will speed treatments to market; and drive changes that matter most to people living with the disease. The unquestionable complexity of this challenge to stop Alzheimer’s fuels our determination to overcome it. Our work is driven by the urgency to find effective treatments and the prevention steps needed to reach the time where no one is lost to Alzheimer’s.

Ruling year info

2011

Chairman and Co-Founder

Mr. George Vradenburg

Main address

5614 Connecticut Avenue NW #288

Washington, DC 20015 USA

Show more contact info

EIN

45-0672514

NTEE code info

Alliance/Advocacy Organizations (E01)

Patient Services - Entertainment, Recreation (E86)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2020, 2020 and 2019.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Alzheimer's disease is the only top 10 cause of death in the U.S. with no treatment or means of prevention, yet federal research funding for it is just a fraction of that for other major diseases. No new therapies for symptoms have been approved in 12 years.

New research says Alzheimer's is America's third leading cause of death — claiming 500,000 lives in 2010 — with more than 5 million slowly dying of it. It particularly affects women, African Americans and Latinos as patients and as caregivers. They are cared for by 15 million caregivers. The direct care costs for Alzheimer's exceed those for cancer and heart disease.

Alzheimer's clinical trials are particularly challenging to conduct. In the U.S., 85-90% experience delayed recruitment and only 7% reach the desired number of participants. Alzheimer's clinical trials require hundreds of global sites, which vary in quality. Recruitment challenges significantly increase trial costs and time, and trials are often repeated.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Early Intervention and Improved Brain Health

The risk and damage of Alzheimer’s to the brain begins decades before apparent symptoms, which means earlier action must be taken.

UsAgainstAlzheimer’s is committed to addressing these challenges and transforming the broader landscape for brain health. By changing clinical practice, government policy, and public perception to focus on everything that can be done to reduce the risk of dementia, we will move closer to a world where healthy brainspan equals lifespan.

Population(s) Served

UsAgainstAlzheimer’s is the leading voice for promoting racial justice in Alzheimer’s care, treatments, and research. Black Americans are twice as likely as non-Hispanic Whites to develop Alzheimer’s; and Latinos are 1.5 times more likely. In addition, women comprise two-thirds of those suffering from Alzheimer’s and 60% of all caregivers. By 2030, nearly 40% of all Americans living with Alzheimer’s will be Black or Latino.

Given these challenges facing communities of color and our nation, there is an urgent need for our leadership at the intersections of health equity, racial justice, and health disparities research. UsA2 is committed to transforming the healthcare system to prioritize health equity and racial justice.

Population(s) Served

UsAgainstAlzheimer’s works to speed treatments to market both in the U.S. and across the world. Our CEO Initiative on Alzheimer’s Disease (CEOi) comprises top business leaders, international organizations, and nonprofit heads to lead UsA2’s global work.

CEOi and the World Economic Forum announced their partnership to speed innovations in treatment and care in January 2020. Called the global Davos Alzheimer’s Collaborative (DAC), this project is envisioned to be a $300 million to $500 million public-private partnership focused on improving disease understanding, streamlining global clinical trials, identifying new targets for drug development, and improving care delivery.

Population(s) Served

UsAgainstAlzheimer’s is developing the scientific basis to ensure that policy, research, and drug development decisions are based on a rigorous understanding of what matters most to those living with the disease and their care partners.

Our What Matters Most research includes the Alzheimer’s Disease Patient and Caregiver Engagement initiative, or AD PACE®, and the ongoing A-LIST® research survey series. Together, these programs present an array of approaches to develop patient and caregiver experience data and gather insights to inform advocacy, research, regulatory approvals, payment and coverage decisions, and care and services.

Population(s) Served

UsAgainstAlzheimer’s works closely with its networks of advocates, partner organizations, and coalitions to accelerate action on treatment, prevention, and ultimately a cure for Alzheimer’s.

ActivistsAgainstAlzheimer’s
AfricanAmericansAgainstAlzheimer’s
FaithUnitedAgainstAlzheimer’s
LatinosAgainstAlzheimer’s
ResearchersAgainstAlzheimer’s
WomenAgainstAlzheimer’s

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of audience members willing to take action on behalf of a specific issue

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of government officials who publicly support the advocacy effort

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of new organizations signing on as collaborators

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Estimated number of funding dollars secured for the sector

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of groups brought together in a coalition/alliance/partnership

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

• Increase the speed, efficiency and diversity of Alzheimer's clinical trials
• Increase attention to brain health in order to delay onset of Alzheimer's—and increase early and accurate detection, diagnosis and treatment of Alzheimer's
• Include the insights and preferences of individuals living with Alzheimer's and their care partners—in drug development and in regulatory and Medicare decisions
• Help advance national care goals and policies in support of individuals living with Alzheimer's and their care partners
• Mobilize Americans to demand a cure and to improve the quality of life of families experiencing the disease
• Assure focused attention to the disparate impact of Alzheimer's on women and minorities

• Build a global, trial-ready platform to reduce cycle time of clinical trials by 2 years and ensure a trial population representative of the diversity of the overall US population
• Launch major brain health initiative in 2018; identify key barriers and potential solutions to early detection/diagnosis and begin strategy implementation in 2018, to increase detection and delivery of diagnosis of Alzheimer's to 50% of affected population
• Launch AD-PACE (Alzheimer's Disease Patient And Caregiver Engagement), a range of patient - and caregiver-informed assets around drug development for Alzheimer's disease
• Grow and engage a nationwide “army" of advocates to call for greater federal Alzheimer's research funding and policies and programs that address the needs of family caregivers for those with Alzheimer's
• Mobilize an Alzheimer's movement equal in scope and power to the breast cancer movement
• Engage communities disproportionately affected by Alzheimer's (women, African Americans, Latinos, veterans), educate them about Alzheimer's and their risks and about the value of clinical trial participation

Since its founding in 2010, UsAgainstAlzheimer's has grown to a staff of approximately 25 full-time-equivalent employees (a combination of full- and part-time staff). Our revenue streams are strong and diverse, including corporate, individual, and family foundation support.

Guided by our collaborative organizational philosophy, UsAgainstAlzheimer's forges results-oriented partnerships and mobilizes the communities most affected by Alzheimer's and those best positioned to help fight it. Our partnerships include a wide range of nonprofit and business organizations with local, national and international presence.

Our seven networks are dedicated to stopping the disease and caring for those touched by it: ActivistsAgainstAlzheimer's, AfricanAmericansAgainstAlzheimer's, ClergyAgainstAlzheimer's, LatinosAgainstAlzheimer's, ResearchersAgainstAlzheimer's, VeteransAgainstAlzeimer's, and WomenAgainstAlzheimer's. Our newest initiative (in partnership with The Youth Movement Against Alzheimer's) is the Youth Against Alzheimer's Coalition, working to position Alzheimer's as an urgent economic and health issue impacting families across generations by mobilizing young people and youth-serving organizations.

In addition, we convene or co-convene major coalitions that also extend our reach through more than 100 key partners who have engaged in our coalitions: LEAD (Leaders Engaged on Alzheimer's Disease), Global CEO Initiative on Alzheimer's Disease, Global Alzheimer's Platform (GAP) Foundation, Faith United AgainstAlzheimer's and Latinos Against Alzheimer's Coalition.

Accomplishments
* Securing the U.S. national goal of preventing & effectively treating Alzheimer's by 2025 through the National Alzheimer's Plan
* Driving efforts resulting in G7 nations' leaders embracing a similar 2025 goal
* Helping drive U.S. investment in dementia research at NIH from $448M in 2010 to $1.4B for FY 2017 (more than 3x increase) and prompting U.K., Canada & Japan to commit to greater research investment
* Creating nationwide, grassroots coalition of 90+ organizations that reach 3 million+ people
* Raising public awareness about Alzheimer's through news media: “Today" Show, NBC News, CNN, PBS, Wall St Journal, Washington Post, USA Today, Boston Globe, Associated Press, Roll Call, Huffington Post, Nature, Science, Scientific American, Psychology Today
* Forging collaborations to improve efficiencies for drug discovery and faster approval processes, including partnership in the first Alzheimer's/dementia patient- and caregiver-powered research network
* Driving U.S. & global action against dementia via appointment of our chairman as founding member of U.S. Advisory Council on Alzheimer's and of World Dementia Council, helping to launch Dementia Friendly America and the Global Alliance on Women's Brain Health
* Launching Global Alzheimer's Platform Foundation to build first global trial-ready platform for Alzheimer's drug development, to reduce time, cost & risk of getting new medicines to those with/at risk of dementia

What's Next?
• Launch of major Brain Health Initiative to educate public on ways to protect their brain and encourage health professionals to administer cognitive testing
• Launch of initiative to better reflect input of Alzheimer's patients & caregivers in new drug development
• Building out programs launched in 2017:
* VeteransAgainstAlzheimer's, to raise attention to Alzheimer's as urgent long-term risk for veterans and service members: expanding membership; developing & pursuing new program strategies
* Our Youth Against Alzheimer's Coalition, to engage millennials to work for an Alzheimer's cure: adding members & partners; developing & pursuing new program strategies
* Our Alzheimer's & Dementia Disparities Engagement Network, to expand this first-ever national network of diverse researchers, patients, caregivers & stakeholder groups for collaboration on brain health disparities in communities of color; hold two teleconferences and 3rd Annual Alzheimer's Disparities Symposium
* 2018 X-PRIZE Global Competition: As founding member of the Alzheimer's team that received top honors in 2017 XPRIZE Summit, we will support team's efforts in the next round. If successful, the team will use the XPRIZE for global crowdsourcing & emerging technologies to detect the earliest moments of Alzheimer's, when it may be more treatable

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.

  • How is your organization using feedback from the people you serve?

    To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

UsAgainstAlzheimer's
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

UsAgainstAlzheimer's

Board of directors
as of 04/11/2023
SOURCE: Self-reported by organization
Board chair

Mr. George Vradenburg

John Dwyer

GAP Foundation

Meryl Comer

Shawn Taylor

KPB Corporation

David Satcher, MD, PhD

16th U.S. Surgeon General, Founder, Satcher Health Leadership Institute, Morehouse School of Medicine

Greg O'Brien

Journalist

William Vega, PhD

University of Southern California

Karen Segal

Founding Board Member, Children’s Research Fund; North Suburban Board, Ann & Robert Lurie Children’s Hospital of Chicago

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 10/20/2022
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

No data

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 05/21/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.