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Alzheimers Disease And Related Disorders Association Inc

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Nonprofit Overview

Causes: Alzheimers Disease, Alzheimers Disease Research, Brain Disorders, Health

Mission: The Alzheimer's Association® is the leading voluntary health organization in Alzheimer's care, support and research with the vision of a world without Alzheimer's. Our mission is 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.

Results: The Association works to provide care and support for all those affected by Alzheimer’s and other dementias. We are here to help. Our free nationwide 24/7 Helpline (800.272.3900) answers more than 300,000 calls annually and provides translation services in more than 200 languages. It is staffed by specialists and master's-level clinicians who offer information and referrals. We offer support groups for caregivers and others dealing with Alzheimer’s and other dementias throughout communities nationwide. Our online community forum, ALZConnected®, provides a place for people with Alzheimer’s disease and their caregivers to connect with others, share questions, find answers and share opinions with individuals or groups in the Alzheimer’s community We provide caregivers and families with comprehensive online resources and information through our Alzheimer's and Dementia caregiving section, which features sections on early-stage, middle-stage and late-stage caregiving. Through the Alzheimer’s Association International Research Grant Program, we have awarded more than $455 million in nearly 3,000 scientific investigations since 1982. We convene researchers at the Alzheimer's Association International Conference® (AAIC)®, the world’s largest forum for the dementia research community.

Target demographics: those with the disease, caregivers and family members.

Direct beneficiaries per year: In FY18, the Association engaged with constituents more than 4.3 million times.

Geographic areas served: The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s disease care, support and research in the U.S.

Programs: The Association drives the nationwide discussion of Alzheimer’s and other dementias and establishes the organization as a dedicated and reliable resource to support community needs. There are an estimated 5.8 million Americans living with Alzheimer's dementia and over 16 million unpaid caregivers. By growing the conversation about the number of affected individuals, and the staggering and growing economic and societal impact of Alzheimer’s, the public and policymakers can take appropriate actions to change the course of the disease. Families can gain the knowledge needed to seek diagnosis, begin available treatments and plan for the future. Awareness of the Association helps these families to access needed resources during their journey with the disease. The Alzheimer’s Association is the world’s largest nonprofit funder of Alzheimer’s research and the nonprofit with the highest impact in Alzheimer’s research worldwide, behind only the Chinese and United States governments as measured by Thomson Reuters InCites™. In our role as the leading convener, collaborator and coordinator, we unite the global research community to accelerate the pace of discovery toward methods of treatment, prevention and, ultimately, a cure. Care & Support - The Association is instrumental in enhancing care and support for all those affected by Alzheimer’s and other dementias. Through our commitment to reliable resources, support and information, we are available wherever and whenever we are needed in communities nationwide, In addition to our respected role in face-to-face support services across the country, we provide support 24 hours a day, seven days a week, 365 days a year through our website and Helpline. As the number of individuals affected by dementia grows, the Association remains a leader in care and support. Our award-winning website, alz.org, and free nationwide 24/7 Helpline (800.272.3900) serve as entry points to our robust resources. In FY18, the Association engaged with constituents more than 4.3 million times. Constituents continue to report in surveys that they are highly satisfied with Association programs and services and would recommend them to others.

Community Stories

11 Stories from Volunteers, Donors & Supporters

62 MaryKayBaum

Volunteer

Rating: 1

As a consumer, volunteer, and board member of a local chapter, I agreed with the rest of the board to leave the national Alzheimer's Association 5 years ago. We did this in order to continue local services to surrounding rural & low-income areas. For it was then that the national Alzheimer's Association board, over much local objection, started requiring 40% of unrestricted income for themselves.
At that time they had already had their very expensive Gold Coast of Chicago corporate office to house their several dozen employees. We were shocked that CEO Johns then received more than $1 million/year in total compensation. Research showed that if you eliminate hospital CEO's and university presidents, $1 MILLION was already way out of line for non-profits who supervised so few staff.
But, in 2012 Mr. Johns' compensation had incredibly raised to $2.8 MILLION per year. That increase makes his pay package one of the fastest growing for nonprofits in the nation. In addition, there are now other additional staff in the national headquarters being paid over $1 MILLION per year.
The national now says that they had to reduce research dollars and increase salaries because they "had to take over operations for nearly 30 chapters since 2005. That means incorporating ... millions of dollars for salaries, travel expenses and other costs previously borne by those affiliates."
So their national fundraising staff in their hard-to-find Madison office is probably being counted as one of those 30 chapters that they just "had to take over". What the national staff does from their Madison outpost with no local accountability is to compete with the real service provider of 35 years, our Alzheimer & Dementia Alliance of WI. Their starting up another office under our former name caused great confusion and competition by scheduling fundraising walks close to ours and pretending they were us. They even had our mail forwarded to them and kept our emails until they got caught doing this. In hindsight, we should have had a no competition and no use of our name clause in our settlement with the national. But we did not expect the national to to be so ruthless.
If you want to assure quality services at the local level support your local chapter or independent organization. ​
For now the national headquarters demands that by 1-15-2015 all its 54 remaining local chapters must sign on to an Agreement called a "Mission Forward" to stay in good standing. Under that Agreement the local chapters would cease hiring their staff, would terminate their separate corporation, and would send 100% of funds they raise to the national headquarters. Many remaining chapters mock this approach, calling it a "Mission Forgotten."
Truly, to achieve better cognitive health we need to engage whole families and whole communities at the local level. We need to change our local cultures to connect all our differing abilities toward public health and well-being. We need our powerful "Mission Remembered".

Review from Guidestar

Previous Stories
40

Volunteer

Rating: 1

I was an active volunteer and board member in my local chapter. Then the celebrity national board decided to force our local chapters to send half of the money we worked hard to raise locally to their national office. That office pays over $ 1 million executive compensation and also rents highest priced office space available in Cicago. This caused many locals to layoff direct service staff. At least three former chapters have had to leave the National organization in order to provide high quality local services. And they have been treated with revenge by the National. But they are continuing to provide excellent services and even contribute to research without the overhead reduction the National applies.
Do check the latest guidestar salary comparisons, but remember there are lots of add-ons and benefits.

33

General Member of the Public

Rating: 1

I received a request for a donation in the mail. The purpose of the donation is very valid but I decided to check on the organization. I was appalled to learn the CEO's compensation for 2011 was 24% of Expenses. Over $550,000!! Put your expenses in line and maybe I will donate in the future. This year the CEO can make my donation**

Review from CharityNavigator

21 Kacee V.

Donor

Rating: 5

I am a donor to a chapter of the Alzheimer's Association and am impressed with what they do for suffering families. I agree their national office does need to re-evaluate their email and telephone fundraising policies, but their program staff, the ones with boots on the ground helping families, are incredible, at least in this local chapter. They hold to an 20/80 expense to revenue which is far better than the industry standard. Yes their CEO makes $550,000, his education and years of experience with another non-profit have earned him that, it is actually considerably lower than most non-profit CEOs, St Jude's Children's Hospital's CEO makes $860,000. While it is true that NIH is the leading founder of Alzheimer's research, the Association is the worlds leading non-profit founder of cutting edge research that might not otherwise receive federal funding. As a result, they have been a part of every major breakthrough in Alzheimer's research in the past 30 years. That is why I am, and will remain, a donor and supporter.

Review from CharityNavigator

25

Donor

Rating: 1

I am a former donor. The amount of unsolicited literature sent, be it free cards, calendars, address labels, etc is overwhelming and bad enough. But their incessant calling on a daily basis under various guises/caller ID's---which I refuse to answer---makes me NEVER want to donate a penny to them again. They did the same thing last year in December and I finally answered the phone to tell them that I would not pledge any money to their association over the phone, that I should be contacted once/year by mail only, in the month of December and only then, would I consider giving again. They obviously didn't listen and don't care. Their constant phone calling borders on harassment. If this is indicative of their core principles and fundraising strategy, they don't deserve contributions.

Review from CharityNavigator

20 Becky34

Donor

Rating: 2

I have been supporting the Alzheimer's Association with annual monetary contributions the past few years. Lately, they have been calling me repeatedly at dinner time soliciting me to mail letters to my friends asking them to contribute to their organization. When I explained to them that my current job, family, and civic responsibilities don't afford me any remaining discretionary time, they would not take my "no" for an answer and said that they would send me a letter writing packet. That's it!! I'm done with this organization. They will get no more contributions from me and I will block their telephone number. Let their CEO, who makes $550,000 a year, mail out letters to his friends and contribute some of his cash to their cause.

Review from CharityNavigator

16

Donor

Rating: 2

This organization seems more committed to building its own empire than to helping Alzheimer's patients. Only 70 cents out of every dollar raised goes to research or to patient/caregiver programs; the rest goes to administration and fundraising expenses. And it's unconscionable that their CEO, Harry Johns, is paid over $550,000 a year. Not exactly a paragon of sacrifice and altruism.

13

Client Served

Rating: 5

As an Alzheimer's caregiver--first for my father, now my mother--I have been given outstanding support by the Alzheimer's Association. I was a longtime member of one of their caregiver support groups, a group that kept me going through information and emotional support when the going was roughest. I've attended their caregiver six-week (once a week) course--invaluable! Twice I went to their financial information group, in which volunteer lawyers talk about managing family finances and the path to medicaid for Mom's care. The Alz. Assn. supports art organizations in New York which provide special tours for Alzheimer's victims and their caregivers--one of not very many mutually enjoyable things Mom and I do together. (more below)

Review from CharityNavigator

17

Donor

Rating: 1

My grandma and I have requested over 10 times to have her removed from the Alzheimer's Association's mailing lists, yet she continues to get mail from them asking for donations on a regular basis. My grandma suffers from dementia herself and often sends money to charities multiple times a week because she can't remember that she already sent them money. Being an organization that is supposed to support people who suffer from dementia, I can't fathom why they would continue to send her multiple mailings, despite being requested to remove her from their list so many times. It is completely disheartening to know that this charity is prowling the same people that they are supposed to be helping and squeezing as much money as they can out of them!

Review from CharityNavigator

13

Client Served

Rating: 2

I am unimpressed with this organization. I never got any help from them when my wife had Alzheimer's. They don't actually fund most of the Alz research - the NIH does that - but they sure seem to take credit for it. Their administrative and fund raising expenses are very high. They lobby Congress for more money for Alz care and research - which I suppose is good - but I am pretty sick of the hype about every "breakthrough" - which may help people 5 or 10 years from now, but won't help anyone already suffering from dementia. How about helping the caregivers who are dealing with this every day of their lives?

Review from CharityNavigator

14

Donor

Rating: 1

I have regularly contributed to this organization for the past several years through the mail. Recently, I have been receiving calls from them, as evidenced on my caller ID. When I would pick up the telephone, no one would be there. Finally on 03/29/11 when I received another one of their calls, I spoke with Jennifer, who promised to take my telephone number off of their list, which she promised to do. In spite of this promise, the calls still continue. Needless to say, I will no longer contribute to this organization.

Review from CharityNavigator