Lauren Miller Rogen can pinpoint the exact moment she feared something was wrong with her mother.
During her college graduation, as her mother, Adele Miller, then 52, repeated the same story a few too many times, she thought to herself, “Oh God, this is happening to my mom, too.”
It was a scenario all too familiar to the actress, now 38, who had watched both her maternal grandparents pass away from Alzheimer’s and dementia while she was in her teens.
Over the next three years, she would also witness her mother lose her memory, her ability to walk or care for herself, and – in the excruciating decade to follow – her life.
While Adele passed away in February, her memory lives on in the fierce battle that her daughter and son-in-law – actor, comedian, writer, producer and director Seth Rogen – wage against Alzheimer’s disease, the sixth leading cause of death in the United States. It has no treatment or cure and carries a great deal of stigma.
In 2012, the Hollywood power couple founded Hilarity for Charity (HFC), a national nonprofit that supports Alzheimer’s caregivers, funds prevention-focused and brain-health research, and organizes online support groups to build community and connectivity. So far, they’ve raised more than $13 million and have awarded families more than 290,000 hours of in-home care relief through their North American Caregiver Respite Grant Program.
One beneficiary of the program is the Anderson family of Ohio, a 2019 HFC Care Grant recipient. Jackie Anderson and her father, Jeff, care for her mother, Sue, who was diagnosed with dementia and signs of Alzheimer’s after experiencing two strokes at 50. While Jackie helps with Sue – who is nonverbal and combative, requiring assistance for day-to-day tasks like showers, going to the bathroom and meals – Jeff bears the brunt of the burden.
Jackie applied for the grant “so he could get out more,” she says, according to the HFC 2019 Annual Report. “It allowed my dad to do things like go to a Browns game and to enjoy activities with his children over the holidays.”
Meanwhile, in Arkansas, Ronny Cerniga felt isolated while caring for her mother, Janice, who was diagnosed with end-stage Alzheimer’s in 2016.
“The biggest challenge is that I’m in a smaller town,” says Cerniga, according to the report. “As a result, there are not many choices for support groups in our region.”
So, when she learned that HFC offered online support groups, she jumped at the chance.
Daniel McGarrity
“What I liked most about the HFC online group was the diversity,” she says. “It was helpful to hear insight from those farther down the line with their loved one’s Alzheimer’s and be able to help by sharing my experiences with those newer to the disease. Some of us became Facebook friends. It’s nice to know I have friends who I can lean on – and, of course, I do the same for them.”
Indeed, being able to talk openly about the disease has been hugely cathartic for Miller Rogen. It’s also brought the couple closer together, as Rogen was the first person she opened up to about her mother’s struggles, months after they started dating.
“You can either ignore these painful elements of your life or really embrace them and try to make your life good in spite of them. It’s not the Jewish way to not talk about your problems all the time,” says Rogen with a laugh. “We both come from that background. I was raised in an environment where you didn’t hide your grief. You had no shame about it. If anything, you just tried to do something about it.”
At first, Miller Rogen bottled up her feelings out of respect for her mother, who didn’t want anyone to know about her diagnosis – not even friends or family.
“She was embarrassed and didn’t want to lose control because she was a woman very much in control of her life,” says Miller Rogen, who grew up in Lakeland. “She got a master’s degree in teaching in the early ’70s, which not many people were doing at the time. She was really active in our synagogue, in our lives and within her school board.”
So, for the first couple years, as Adele grappled with the disease, Miller Rogen suffered in silence, she says.
“It ate me alive from the inside and put me in a really dark place. When I eventually started talking about it, a friend suggested doing a fundraiser to raise money for the Alzheimer’s Association, [an idea that] was incredibly touching but also terrifying.”
Greg Gayne
After the couple’s first variety show fundraiser in January 2012, an event that has since become an annual tradition, young people poured out of the woodwork, saying they’d never heard anyone their age talk about Alzheimer’s before. Soon, Miller Rogen realized that, even though she was in her 20s, she was far from the youngest to have felt the impact of this disease. What started as a movement within the Alzheimer’s Association soon evolved into a fully fledged organization.
“We created college programs so young people could start taking action as well as a grant program to help people afford care at home,” says Miller Rogen. “So many families are forced to make decisions about caring for their loved ones based on their finances. And that’s really terrible.”
In 2014, Rogen made headlines by testifying in front of Congress to ask for increased federal funding for Alzheimer’s disease care and research. While only two senators showed up that day (the other 16 committee members left early or didn’t attend), his heartfelt testimony about his mother-in-law’s struggles became one of C-SPAN’s most watched videos of all time.
“It was lovely to be asked to do that, and the result is something that I’m very pleased with,” says Rogen. “I walked away that day being pretty unhappy, like we were up against an immovable force that didn’t care at all about the cause we were talking about.”
However, in the days that followed, he began to re-evaluate the experience as something quite inspiring, he says.
“I’ve put a lot of stuff on YouTube that I would assume would have much more appeal to people, but this testimony became one of the most viewed things I ever did. I think it struck a chord with a lot of people who had been dealing with this disease and felt unrepresented. It showed us we were on the right track.”
Support for their cause has continued to pour in from the entertainment community, for which Rogen says he is especially thankful. In 2018, the annual HFC fundraiser – a star-studded, stand-up comedy special – was taped live and broadcast on Netflix. “Seth Rogen’s Hilarity for Charity,” which is still available to stream on the platform, features some of the biggest names in comedy, including John Mulaney, Tiffany Haddish, Sarah Silverman, Jeff Goldblum, Kumail Nanjiani, Sacha Baron Cohen and James Corden.
Last year’s fundraiser was a county fair in Los Angeles where each booth was manned by an actor or comedian, including the likes of Busy Philipps, Nick Kroll and Ilana Glazer, while this year’s event was a virtual game, Head To Head, held Oct. 21 and hosted by Rogen.
“It’s not lost on me that a lot of very talented, very busy people are donating their time and energy and output to us. It’s something I’m very appreciative of,” says Rogen. “Comedians are very kind.”
With Lauren’s brother, Daniel Miller, serving as board chair, HFC has also partnered with the Alzheimer’s and Dementia Prevention Clinic at Weill Cornell Medicine in New York to create educational courses on brain health for high school, college and medical school students. Current research suggests that one in three cases of Alzheimer’s is preventable, which many people don’t realize, says Rogen.
“A lot of people feel incredibly hopeless when it comes to Alzheimer’s and brain health. I don’t think they know there are things you can do that will keep your brain healthy for longer and delay the disease. Sleep is very important. Don’t eat sugar. And exercise. Those are the three fundamental things I would say anyone can do to potentially add decades onto the health of their brain.”
Together, Miller Rogen and Rogen have helped move a disease that has lived in the shadows into the spotlight.
“People who are living with Alzheimer’s are writing books, caregivers are sharing their stories,” says Miller Rogen. “Through that connection, conversation and giving young people a voice, I think we’ve really moved the needle. The disease is in a different place because people talk about it now. I have found so much light in this darkness and so much hope. It’s been quite a journey for me and for Seth and our organization.
“I know my mom would be really proud of it.”
To learn more about how HFC is bringing light to Alzheimer's, visit www.wearehfc.org.