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Alzheimer's Disease and Related Disorders Association Organization Name provided in the GuideStar Exchange* as of 02/26/2014: Alzheimer's Disease and Related Disorders Association

Organization Name as listed in the IRS Business Master File as of 06/09/2014: ALZHEIMERS DISEASE AND RELATED DISORDERS ASSOCIATION INC

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AKA  Alzheimer's Association
Chicago, IL
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GuideStar Summary

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&1002; Registered with IRS Legitimacy information is available
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&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2013, 2012, and 2011 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

Alzheimer's Disease and Related Disorders Association Organization Name provided in the GuideStar Exchange* as of 02/26/2014: Alzheimer's Disease and Related Disorders Association

Organization Name as listed in the IRS Business Master File as of 06/09/2014: ALZHEIMERS DISEASE AND RELATED DISORDERS ASSOCIATION INC

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Also Known As: Alzheimer's Association
Physical Address: Chicago, IL 60601 
EIN: 13-3039601
Web URL: www.alz.org 
Blog URL: blog.alz.org/ 
NTEE Category: G Disease, Disorders, Medical Disciplines
G83 Alzheimer's
G Disease, Disorders, Medical Disciplines
G48 Brain Disorders
Ruling Year: 1985 


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Mission Statement

To eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

Legitimacy Information

This organization is registered with the IRS.

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

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Annual Revenue & Expenses (IRS Form 990, July 2011)

Fiscal Year Starting: July 01, 2011
Fiscal Year Ending: June 30, 2012

Total Revenue $104,575,489
Total Expenses $99,828,372

Revenue & Expenses

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership (GuideStar Exchange,
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February 2014)

Mr. Harry Johns

Term:

Since Sept 2005

Profile:

Harry Johns became the president and chief executive officer of the Alzheimer's Association at the beginning of September 2005. Since his arrival, he has launched new initiatives to advance the cause, including the first nationwide campaign to increase understanding and awareness about Alzheimer's, a project to accelerate treatment progress by promoting participation in clinical studies and a variety of program offerings designed to support both individuals with the disease and their caregivers. He has substantially increased both revenue and program expenditures to support the mission of the organization. Prior to joining the Alzheimer's Association, Johns spent more than 22 years in various positions with the American Cancer Society (ACS). In his final role at ACS, he served as the executive vice president for strategic initiatives and as a member of the four person executive team. He was responsible for nationwide strategy directions, including information delivery, community programs, advocacy, marketing and fundraising. Johns earned a bachelor's degree in business administration from Eckerd College in St. Petersburg, Fla., and a master's degree in business administration from the Kellogg Graduate School of Management at Northwestern University in Evanston, Ill. He serves on the boards of Research America and the National Health Council.

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February 2014)

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February 2014)

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Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in February 2014

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Programs

Program: Research (GuideStar Exchange,
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February 2014)

Budget:
$30,156,229
Category:
Medical Research
Population Served:
General Public/Unspecified

Program Description:

The Association provides funding for studies exploring disease characteristics, causes and probable characteristics.

Program Long-Term Success:

To find a cure for Alzheimer's disease.

Program Short-Term Success:

To better understand the characteristics and causes of Alzheimer's disease.

Program Success Monitored by:

Success is monitored by senior management and the Medical and Scientific Advisory Council.

Program Success Examples:

The year 2007 entered the history books as a period of tremendous advances in Alzheimer research. These advances occurred on all fronts, encompassing areas as diverse as genetic risk factors for Alzheimer's, imaging studies to identify Alzheimer's in the living brain and blood tests that may one day be used to diagnose Alzheimer's.
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Impact Summary from the Nonprofit

Alzheimer's Association Key Accomplishments FY09 – FY11 350,000 advocates and 120 Ambassadors successfully worked with leaders in Congress and with the White House to create and enact the National Alzheimer’s Project Act. Worked closely with the top leadership of the Social Security Administration to achieve the inclusion of Alzheimer's and certain other dementias in the Compassionate Allowances initiative. Successfully pushed for the inclusion of cognitive impairment detection as mandatory part of the Medicare Annual Wellness visit. Fielded nearly 700,000 calls at the nation’s only 24/365 toll free Alzheimer’s Helpline   Created and released the first revised Alzheimer’s diagnostic criteria in 27 years in partnership with the National Institute on Aging. Developed recommendations to support clinical trials requested and implemented by the Food and Drug Administration.  Rebranded and grew our signature event, Walk to End Alzheimer’s™ ,with a 36% increase in participation over three years and 10% growth in revenue. Published and promoted key resources about Alzheimer’s disease and its impact, including our annual Facts and Figures, Changing the Trajectory of Alzheimer’s: A National Imperative, Generation Alzheimer’s, HBO’s “The Alzheimer’s Project,” and The Shriver Report: A Woman’s Nation takes on Alzheimer’s Developed and successfully launched the Know the 10 Signs: Early Detection Matters campaign. Funded nearly 250 peer-reviewed grants to advance Alzheimer’s research. Helped more than 13,000 Trial Match participants begin profiles to sign up as volunteers for clinical trials in order to help speed research Hosted and grew the Alzheimer's Association International Conference, converting the gathering into an annual event that draws thousands of participants from around the world. Selection twice by The Nonprofit Times as one of the “Best Nonprofits to Work For,” winning the designation, “Best Large Nonprofit to Work For” in 2011.

Expert Assessment

The Alzheimer's Association has successfully brought Alzheimer's disease to the public consciousness and has provided meaningful services that have supported those with the disease as well as their families. This organization has been a trusted national leader on the issue and has offered helpful services to other agencies working in this field. Read More »

Expert Reviews and Comments

2011 Philanthropedia Top Nonprofit

This organization is a 2011 Philanthropedia top nonprofit, recommended by experts as having high impact.

These expert reviews were generated through Philanthropedia's research methodology to identify high-impact nonprofits. Learn more

Evidence of Impact

The Alzheimer's Association has successfully brought Alzheimer's disease to the public consciousness and has provided meaningful services that have supported those with the disease as well as their families. This organization has been a trusted national leader on the issue and has offered helpful services to other agencies working in this field.

Wide Array of Important Services
I see their impact as two-fold: 1. The Alzheimer's Association advocates for adequate care and the search for a cure for the disease; and 2. there are a lot of families across the country that would be absolutely lost without the support and information provided by the Alzheimer's Association, both nationally and at the local affiliate level. Nonprofit Senior Staff
They are good at providing respite, caregiver support, and leading advocacy. Researcher and Faculty
Successful Advocacy Efforts
In terms of their advocacy, they have had an influence on federal funding for research and have increased support for services from federal agencies for Alzheimer's disease care, direct funding of research, and public education. Researcher and Faculty
They do cutting edge research and advocacy. They have great marketing tools and messaging, and they put a public face on Alzheimer's disease. Nonprofit Senior Staff
They have provided successful advocacy for a national plan for Alzheimer's research. Foundation Professional
Great Responsiveness
It has been able to change to respond to research, new on the ground knowledge, and listen to the families and those living with the disease. Other
Good Collaboration with Other Organizations in the Sector
The Alzheimer's Foundation of America maximizes funds spent on program services and minimizes administrative services. I lead an Alzheimer's Caregivers Support Group, and the Alzheimer's Foundation offers a toll-free helpline with counseling by licensed social workers, educational materials and helps fund professional education and training that I have taken advantage of. Nonprofit Senior Staff
They have been successful in partnering with the local chapter for education and training. Nonprofit Senior Staff
Skilled at Raising Awareness
There are many serious illnesses and challenges that people face when they get older, but they have managed to bring national attention to a particularly horrible disease. Nonprofit Senior Staff
This organization has raised the public recognition of mental illness in general and Alzheimer's specifically. It has taken a "dirty family secret" and given it status as a credible health condition with signs, symptoms and, treatments. Nonprofit Senior Staff
A Strong National Leader
They are the leading organization related to Alzheimer's disease. Researcher and Faculty
This association is the go-to source for current information about Alzheimer's disease, research and clinical drug trials, prevalence rates, and funding opportunities. Researcher and Faculty
Excellent Educational Materials & Support
They provide excellent educational materials at the national level and excellent support to individuals and training excellence at the state and regional levels. Other
Strong Advocacy Organization
They are a strong advocacy organization that offers training to local citizens to become better advocates. They support early diagnosis research and treatment. Key leaders who are now being appointed to serve on NAPA. Researcher and Faculty
Great Advocacy & Research
They have great education and outreach. I love their support of research. Researcher and Faculty
Alzheimer's is a key under-addressed issue for the aging population. More resources are needed in this field to make people aware of and engaged in the issue are key to success. They have an outstanding leadership in advocacy and research. Nonprofit Senior Staff
High Visibility
They are a leader in driving issues for older people. Nonprofit Senior Staff
Helpful to Family Caregivers
Their information and resources provided for caregivers make a huge contribution to families struggling to care for loved ones, i.e., local and online support groups. They are excellent advocates for research and new treatment strategies on national and state levels. They have strong public awareness and education programs. Other

Organizational Strengths

Experts have noted that this organization's major strengths are its effective outreach and marketing operations, its collaborative work with experts in the field and other local organizations, and its high visibility among the public.

Connections to Experts and Local Partners
Their information-sharing with partner organizations is a strength of theirs. Nonprofit Senior Staff
Their strengths include their cope, profile, and connections with the research community. Researcher and Faculty
The organization is well-run and provides support to chapter sites throughout each state. They also publish a well-respected and peer-reviewed journal. Researcher and Faculty
Effective Outreach and Marketing
They have strong marketing and advocacy outreach. Researcher and Faculty
The strength of this organization is the marketing they do so the issues are known in the community. They also utilize many volunteers that help support the organization, as well as excellent professional staff who are knowledgeable. Nonprofit Senior Staff
They have been effective in reaching out to the public, co-hosting a lecture with national speakers, and fundraising to contribute to research on a national level. Nonprofit Senior Staff
High Visibility
They have been working hard to keep this sometimes frightening issue at center stage. Other
They have established high recognition and give support to caregivers, as well as for older adults with dementia. Foundation Professional
Because of their visibility, everybody has heard of Alzheimer's disease. Most medical communities have provisions or therapies specific to Alzheimer's. Nonprofit Senior Staff
Great Leadership
Their leadership and marketing seemed to have propelled them to the next level. Nonprofit Senior Staff
Strong Operations and Organization
Their regional offices, fundraising, and care consultation model are their main strengths. Researcher and Faculty
They excel because of their leadership, research and strategic planning. Nonprofit Senior Staff

Areas for Improvement

The areas in which the Alzheimer's Association can improve are in its internal organizational structure, the way in which it communicates with the public, and in the partnerships it seeks out.

Greater Internal Cohesion
The coordination with local and state Alzheimer’s Association units could be stronger. Researcher and Faculty
Greater Diversity of Outreach
They should increase outreach to families of limited means and multicultural groups. They can also increase the dollars raised for direct service -- care consultation and habilitation. Other
Better Communication with the Public
The Foundation could improve the communication to the public. Often the staff is so busy, messages are not answered on a timely basis. Nonprofit Senior Staff
There have been times when emails to the national chapter have not been responded to. Researcher and Faculty
More Partnerships
I think their partnership models could improve. They might consider partnering with other organizations within the field of aging to maximize their impact, especially in a challenging economy like this one. Nonprofit Senior Staff
Organizational leadership could put more emphasis on building collaborations with professionals. They choose one provider, who is saturated, at the exclusion of others. Few women are in leadership positions. Researcher and Faculty
More Funding
They should have additional funding for caregiver support and respite programs. Nonprofit Senior Staff
Increased Scope of Issues
Advocacy and education efforts could expand the focus to other related types of mental illness. Nonprofit Senior Staff
Focus on Alzheimer Sector
They do not play with others. They have abandoned the sector. They need to come back to taking a leadership role. Foundation Professional
Make Inclusion/Diversity More Central
I think they appear fairly conservative and could make inclusion/diversity a more central mandate. Researcher and Faculty
More Advertising
They provide good services but more people need to know about them. Nonprofit Senior Staff
More Focus on Vulnerable, Frail, Older Adults
The Alzheimer's Association seems to be another powerful group. They do not seem to participate consistently with the Leadership Council of Aging Orgs or to form partnerships as well as when Brenda Sulick was their Director of Federal Advocacy. Also, I was on the Hill a few months ago and heard from a high-level Hill staffer that they did not emphasize protection of Medicaid in their advocacy day. I believe they should advocate more forcefully for the most vulnerable, frail older adults - those on Medicaid who are living in nursing homes or receiving LTSS in their homes. Nonprofit Senior Staff
Emphasis on Advertising
Their advertising leads to belief that they are beneficial. Researcher and Faculty

From the Nonprofit

The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research. Founded in 1980 by a group of family caregivers, the Association includes the national office in Chicago, the public policy office in Washington, D.C., and chapters in communities across the country.

Alzheimer’s disease is both a global and national epidemic. Worldwide, more than 35 million people are living with the disease. In the United States alone, an estimated 5.4 million people have Alzheimer’s, and nearly 15 million are serving as their caregivers. Alzheimer’s is the only cause of death among the top 10 in the United States without a way to prevent, cure or even slow its progression.

The Alzheimer’s Association strives to address this epidemic by providing information, education and support for millions of individuals, caregivers and medical professionals who face dementia every day.

We provide care and support across the country.
• Our 24/7 Helpline (1.800.272.3900) offers free support and information on a variety of topics, including treatments and clinical trials, care strategies, and legal, financial and housing decisions.
• Our award-winning website at www.alz.org is a rich resource that helps inform and educate.
• Medic Alert® + Alzheimer’s Association Safe Return® is a 24-hour nationwide emergency response service for individuals with Alzheimer’s or related dementia that wander or who have a medical emergency.
• The Alzheimer’s Association Green-Field Library, the nation’s largest devoted to Alzheimer’s disease and related dementias, provides reference and research services accessible virtually.
• Our local chapters host thousands of support groups and educational sessions in communities nationwide.

We advance research into methods of prevention, treatment and ultimately, a cure.
• The Alzheimer’s Association is the largest nonprofit funder of Alzheimer’s disease research. Through our International Research Grant Program, we have committed more than $292 million to 2,000 best-of-field grant proposals since 1982.
• The Alzheimer's Association International Conference (AAIC) is the world's largest conference of its kind, bringing together researchers from around the world to report and discuss groundbreaking research and information.
• We lead the World-Wide Alzheimer’s Disease Neuroimaging Initiative (WW-ADNI) a global consortium of international investigators working to predict and monitor the onset and progression of Alzheimer’s.

We advocate for the needs and rights of people facing Alzheimer’s.
• Through our efforts, we have helped pass landmark legislation such as the National Alzheimer’s Project Act, mandating a coordinated national plan to address Alzheimer’s disease. When approved, the plan should accelerate the development of treatments, focus and coordinate federal efforts, and improve early diagnosis and care coordination.
• We call for an increased commitment to increased research funding from the federal government. Currently, for every $2.80 that Medicare and Medicaid spend caring for someone with Alzheimer’s, the federal government invests only $.01 on Alzheimer’s research.
• We demand better access to diagnosis and care planning. Unfortunately, most people with Alzheimer’s disease and other dementias have not been diagnosed, preventing them from accessing the best treatments and planning for the future.

Join the cause. Visit us at alz.org.
• Connect with a local chapter and participate in a support group, attend one of our educational workshops or volunteer within your community.
• Advocate for those affected by Alzheimer’s and urge legislators make the disease a national priority.
• Participate in Walk to End Alzheimer’sTM, the nation’s largest event to raise awareness and funds for Alzheimer’s care, support and research.
• Donate to advance vital research and further care and support programs.
— Submitted January 20, 2012 at 8:30 PM
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