The Alzheimer’s Association traces its roots to 1980, when a group of family caregivers and individuals got together to start an organization focused on research for treatment and a cure. It was a mission personal to founding President Jerome H. Stone, a Chicago businessman whose wife Evelyn was diagnosed with Alzheimer’s a decade prior.
It is also personal to Princess Yasmin Aga Khan, daughter of legendary actress and dancer Rita Hayworth, who was diagnosed with younger-onset Alzheimer’s disease in 1980, and of the late Prince Aly Khan, Pakistan’s former representative to the U.N.
On Monday, September 16 in New York City, the Alzheimer’s Association celebrated 40 years of its Imagine Benefit, continuing the legacy of the iconic Rita Hayworth Gala. Aga Khan launched the gala in 1984 to honor her mother and raise funds for the Alzheimer’s Association, which has characterized itself as the largest nonprofit backer of research into the disease, drawing on big gifts as well as plentiful small-donor support. The multicity galas alone have generated over $87 million for the Alzheimer’s Association’s mission through the years and raised awareness of a condition that affects over 6 million Americans and over 11 million family members and caregivers.
The event was held on Manhattan’s Upper East Side at the Carolina Herrera flagship store. Inside Philanthropy attended the event and had a one-on-one interview with Aga Khan, who spoke more about her mother’s legacy, the importance of the fundraiser, and how the Alzheimer’s Association has carried the flag as a leading charity for Alzheimer’s research and advocacy for decades.
A night in New York
Held on a comfortable late summer evening, the cocktail event drew over 100 guests and was hosted by Aga Khan, along with Carolina Herrera President Emilie Rubinfeld and Creative Director Wes Gordon. Striking portraits and sculptures by artist Brad Livingstone Black adorned the first and second floors of the event. Black donated a percentage of sales from the evening to the Alzheimer’s Association. Carolina Herrera also donated 15% of event proceeds for the week back to the Imagine Benefit in support of the Alzheimer’s Association.
“For the first time ever, we have two FDA-approved drugs on the market [for Alzheimer’s],” began Oliver Kennan, co-chair for this year’s Imagine Benefit. “And while neither of these are cures, this moment is transformational and years of research have finally become reality.”
Though questions remain regarding the effectiveness of the new Alzheimer’s treatments, the fact that they exist at all — after decades with no such options whatsoever — is something of a vindication for Alzheimer’s philanthropy. Nonprofit funding has played an outsized role in research through the Alzheimer’s Association as well as other channels like the Alzheimer’s Drug Discovery Foundation, founded by Leonard and Ronald S. Lauder at the urging of their mother Estee Lauder, who had Alzheimer’s when she died in 2004.
The event at Carolina Herrera was a prelude for the Imagine Benefit event on October 23 at the Plaza Hotel. Funds raised at the Imagine Benefit 2024 will support the Alzheimer’s Association’s care, support and research programs and the local efforts of the New York City chapter of the association. In New York, more than 410,000 people are living with Alzheimer’s disease, with an additional 546,000 in New York who provide unpaid care to someone living with the disease.
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“My biggest hope is that we obviously find a cause and treat it”
“It’s wonderful. It’s been 40 years,” Aga Khan told me when I caught up with her in a quiet section of the event. “My mother suffered from the disease. She had early onset. I didn’t know at the time what it was. We had the diagnosis here in New York City.”
But on the heels of the devastating news, Aga Khan did an interview with Barbara Walters, which caught the attention of Jerome Stone and the emerging Alzheimer’s Association, then a “mom-and-pop group,” as Aga Khan put it.
A lot has changed since then, and today, the Alzheimer’s Association holds nearly $500 million in assets per 2023 fiscal year records, raking in a mix of donors, many of whom also have a personal story of the disease touching them or their loved ones. The personal aspect of philanthropy for neurodegenerative conditions, as with other health causes, is hard to overstate, and has helped drive additional funding in this direction.
There have also been changes, Aga Khan thinks, surrounding the stigma around the disease. One of the issues back in the ’80s, when Hayworth was diagnosed, is that many people were still in denial about the true danger of Alzheimer’s. Still, a cure proves elusive, and this is how philanthropy, she thinks, can play a role. “My biggest hope is that we obviously find a cause and treat it.” And while Alzheimer’s might be the most well-known cause of dementia, it’s by no means the only one.
She mentioned other neurodegenerative diseases like frontotemporal dementia, a rare, progressive brain disease that affects the frontal and temporal lobes of the brain, and Lewy body dementia, in which abnormal deposits of a protein lead to a progressive brain disease that causes problems with thinking, movement, behavior and mood. “There are several dimensions,” Aga Khan said. (See more on funding for Alzheimer’s and other neurodegenerative conditions in our white paper on the subject.)
In advance of the 2024 Imagine Benefit at Plaza hotel, Aga Khan’s hope is for full honesty about the devastation of the disease; Alzheimer’s diagnoses are predicted to grow in the coming years, with cases in the U.S. projected to double to 13 million by 2050 without effective treatments. Aga Khan continues to speak powerfully about the disease four decades later.
“Denial has been a big problem. And if you bring awareness and everyone uses the word, and talks about it, then they’re more likely to say, ‘Hey, I have a loved one, and the behavior is kind of similar to what I’m hearing,’” Aga Khan said. “Then there’s hope, there’s the Alzheimer’s Association. There’s an 800 number. There are chapters throughout the country, right?”
