A Virtual Event for Alzheimer’s Family Caregivers Evolves

Hilarity for Charity, Seth and Lauren Miller Rogen’s nonprofit in support of Alzheimer’s family caregivers, continues to improve its online event to strengthen that community.

Author: Curt Wagner       

Seth Rogen and Lauren Miller Rogen laughing in online chat

Seth and Lauren Miller Rogen answer fun questions for part of HFC’s CareCon 2022 pre-show. The Rogens started the nonprofit HFC in 2012 as a way to help family caregivers of Alzheimer’s patients.

In February 2021, less than a year into the COVID-19 pandemic, Hilarity for Charity — the nonprofit led by Seth Rogen and Lauren Miller Rogen and dedicated to support families impacted by Alzheimer’s disease and to promote brain-health advocacy and education — organized its first-ever CareCon to honor and connect family caregivers.

Alexandra Villano headshot

Alexandra Villano

The Rogens launched the organization in 2012, inspired to take action after Lauren’s mother, Adele, was diagnosed with the disease at 55. She passed away in 2020. Over the past 10 years, Hilarity for Charity — now rebranded as simply HFC — has raised more than $17 million for the cause partly by hosting a variety of in-person events, including a 10th birthday “extravaganza” on Oct. 1 in Los Angeles that featured celebrity supporters and the comedic couple’s friends.

But CareCon has never been planned as an in-person event. The free, virtual event sprung out of the organization’s goal to provide respite for family caregivers. Since it began, HFC has provided more than 375,000 hours of in-home care relief through its Caregiver Respite Grant program. In the first year of the pandemic, people at HFC recognized that caregivers were feeling detached from others in similar situations, said Alexandra Villano, senior director of program development and strategy at HFC. “We introduced CareCon as a way to bring caregivers together and reduce isolation,” Villano told Convene. “But now it is an annual virtual event.”

CareCon 2022, which took place Feb.18 — National Caregivers Day — offered the 700 online participants two hours of programming. The first hour presented four 30-to-40-minute panel discussions featuring doctors and other experts as well as some more well-known faces. In the Caring for Brains panel, actor and producer Amy Poehler told her own story about how she changed her sleeping habits for her brain health. During the Driving Awareness and Inspiring Change panel, Pamela Adlon, creator and star of the TV series “Better Things,” talked about including a character with Alzheimer’s in the show.

The second hour of CareCon 2022 consisted of 12 concurrent workshops lasting up to an hour, covering topics for caregivers including brain-healthy foods, mastering self-care, reducing stress, and adopting mindfulness tools, among others. The program also included a pre-show event, an intermission, and an audio “host” who provided updates and announced when new sessions were starting.

None of this was possible during the inaugural 2021 event, Villano said, because organizers had to cobble together a “very complex” mix of live and prerecorded panels with no active participation for those watching. For 2022, she said, “we wanted a better sense of connectivity for the people in our virtual rooms.”

panelists in virtual session

Seth Rogen (top right) moderates the Caring for Brains panel featuring Amy Poehler (clockwise from top left), neurologists Dr. Richard Isaacson and Dr. Eseosa Ighodaro, and deejay Steve Aoki.

HFC used the virtual conference platform Frameable Events, formerly called Social Hour, for the 2022 CareCon. The new platform allowed HFC to utilize multiple virtual rooms — they used 21 for the event — and to give the audience a better experience through the use of attendee avatars that appeared under the video screen during a panel or workshop, and a live chat function that they did not have in 2021. “Seeing the little avatars you can tell who is in the room, which is fun, and you feel like you’re part of this group,” Villano said.

The event’s sponsors were provided “tables” in sponsor rooms, and participants could come in to learn about their products or ask questions. In these smaller rooms, attendees with their own video cameras turned on could see others on camera almost “like you see people at an in-person event,” Villano said. “That was another way that people were able to feel connected.”

Having the concurrent panels and then workshops allowed HFC “to cover way more material,” Villano said. And making recordings almost instantly available meant attendees could watch live and then see other sessions on the same day — or later on Youtube, where they still exist on the HFC page.

HFC plans to keep the current format of panels in the first hour and workshops in the second for CareCon 2023, which will be held on Feb. 17. But Villano and her team are planning some changes to add even more personalization and more community building. During a smaller HFC event in June on the same platform, they created a caregiver lounge where participants hung out after the event to get to know each other as well as discuss sessions, she said. HFC plans to do a bigger version of that at CareCon 2023, as well as create affiliate rooms for different groups of caregivers. “We want people to find each other based on shared experiences,” she said, so they are considering creating rooms for adult children under 50 or early onset spouses, for example. “It makes for a much more self-directed experience, whereas with some of the Zoom environments, you’re more passive,” she said.

It’s all part of the group’s mission to provide education, support, comfort, and even some laughs to family caregivers of Alzheimer’s patients, Villano said. “It is nice to get feedback from CareCon [participants] that they are feeling more connected and less alone, and also that they learned new things,” she said. “That’s big.”

Curt Wagner is digital editor of Convene.

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