You know your event is a success when it has its own hashtag.
Which is exactly what happened during last year’s third annual Memory Ball (aka #memoryball), a Toronto fundraiser that raises money for Alzheimer’s. “That was really cool,” says Carolyn Poirier of the social media victory.
Poirier, now 26, co-founded the party in 2012 with five girlfriends. Since then, it has sold out three times, raised over $120,000 for the cause and educated hundreds of people about a disease that that so rarely gets attention, especially among the 20- and 30-year-olds who form the core of Memory Ball’s swishy crowd.
Plus there are burritos—hot and delicious and distributed to each guest on their way out.
“It’s a long night, lots of socializing and dancing—we want people to leave happy,” says Carolyn. It’s a detail her mother Jane would have appreciated.
Just a few years ago Jane Holland (mother to Carolyn and her younger sister Claire, 20 was one of the most respected PR whizzes in Toronto. “You couldn’t say no to Jane,” says Carolyn.
“This is a woman who once built a condominium out of ice to promote a client and then got Kurt Browning to do a double axel in it.”
Holland was president (and founder) of Lewis Carroll Communications—the type of woman who could take a conference call, serve a meal and proofread her daughter’s essay all at once. And then, starting in the spring of 2008 when she was 54, that wonderful woman started to slip away.
Having their mother diagnosed with early onset Alzheimer’s was not something that the then 14- and 19-year-old Poirier sisters were prepared for. Like most people, Carolyn and Claire thought of the disease as something that affected much older adults. Their paternal grandfather had died from Alzheimer’s still they tried to blame the changes they saw in their mom—erratic moods, unusual driving habits, an increase in drinking—on anything but.
“We thought she was going crazy—we were convinced it was menopause,” says Carolyn, and both sisters laugh.
We have the Mamma Mia! CD on a loop at our house every day.
A caustic sense of humour is another thing they now share, along with caretaking duties. Both girls moved back home several years ago to help their father Clarence take care of their mom. “We have the Mamma Mia! CD on a loop at our house almost every day,” says Carolyn of the soundtrack they hope will bring Jane a little comfort. “You just have to laugh.”
The early adjustments were painful. “There are so many things that we thought we would do with our mom—shop for prom dresses, pick out university programs, first apartments,” says Claire, who was starting high school when Jane got sick.
Each sister dealt with the situation in her own way. Claire, took a few years before she was comfortable sharing the information with friends. Carolyn—who was a student at Laurier during the early stages—wanted to feel a level of control and started emailing friends about the possibility of a fundraising effort. “I got so much amazing feedback right away, and I just thought—okay, this could really be something.”
A committee of high school and university friends started to assemble. Things clinched after Carolyn was introduced to Kathryn Fudurich, another Toronto 20-something whose mother Pat also has early onset dementia. “The first day Kath and I met it was this amazing feeling of finally having someone who knew exactly was I was going through,” says Carolyn. “I think we stayed chatting in Starbucks for three or four hours.”
The committee began meeting weekly to discuss issues like food, entertainment and venue. All of the women involved are young professionals with solid social networks, which made ticket sales easier than expected (a $125 early bird ticket price is comparable to a night out at a nice restaurant).
Alzheimer’s needs to be yelled and screamed until it gets the funding and attention it needs.
The first Memory Ball was held on the second floor of the Andrew Richards Design Studio in Toronto’s east end. The proceeds exceeded the initial goal by a few thousand. “We were so excited and eager to make our donation that first year—we literally wrote a cheque for $23,207 and 12 cents,” says Claire. (They’ve since learned that it’s bestto keep a few hundred float from year to year.)
Since the inaugural event, proceeds for Memory Ball have been on the uptick. The party raised $35,000 in 2013 and $65,000 earlier this year. Proceeds go to funding family support groups run by the Alzheimer’s Society of Toronto, along with medical research.
“For a fundraising event, just making it to a third year is a significant milestone,” says Candice Best, president of Best PR in Toronto. Best estimates that about a hundred new fundraising parties start up in Canada every year, but only a small number of those go the distance.
Add to that the nature of the cause, whiich isn’t as optimistic as anti-poverty initiatives or a curable disease like cancer. “People want to feel a sense of hope about the cause they support,” says Ken Wyman, head of the fundraising program at Humber College.
Wyman references the early days of the AIDS crisis: “It was depressing, everyone was dying and nobody wanted to touch it [from a fundraising perspective].”
Degenerative, neurological diseases face a similar stigma, though there has been some progress. Earlier this year the Weston family (of Loblaw and Holt Renfrew fame) donated $50 million for a research institute aimed at finding cures for Alzheimer’s, Parkinson’s and other brain diseases.
Last February, the Canadian actor Seth Rogen (whose mother-in-law has Alzheimer’s) testified in front of a U.S. Senate committee in an effort to call raise awareness and call for more government support.
“Americans whisper the word Alzheimer’s because their government whispers the word Alzheimer’s. It needs to be yelled and screamed until it gets the funding and attention it needs,” Rogen said, adding that should American audiences ever decide to reject genital-driven comedy, he would be unable to afford the enormous expenses associated with the disease.
The members of the Memory Ball committee are dedicatedto making a connection between the people who come to their event and the cause they are so passionate about. Every year there is a series of speeches and presentations. Both Carolyn and Claire havespoken. So has their dad Clarence, who, like Kathryn Fudurich, attends annually.
Last year they showed a video titled “Through The Eyes of Someone With Alzheimer’s.” It was a poignant and chilling depiction of what the daily reality of someone like Jane Holland is really like. “I have had so many of my friends tell me that they really had no idea what Alzheimer’s was before attending our event,” says Claire.
Next year they will move to a event space that can hold more people. The goal is to pull in even more money, and, of course, to have fun. “After the silent auction is over, we can sort of let our hair down a bit. We dance, ”says Carolyn. Their dad has been known to join them on the dance floor.
It’s a typical family moment that Jane Holland would have loved. “Our mom was such a strong and dedicated person. If she could be, she would be fighting so hard for this cause,” says Carolyn. Instead, her daughters fight for her.
The next Memory Ball will take place In spring 2015. To find out more, go to memoryball.org.
Courtney Shea writes for The Globe and Mail, Toronto Life and Canadian Business magazine.