May 8th, 2014
By Marianne Apfelbaum
The Vermont chapter of the Alzheimer’s Association and the University of Vermont were in the spotlight at Merrill’s Roxy Cinemas last Thursday — Hollywood star Seth Rogen visited the Green Mountain State to recognize the efforts of a UVM fraternity that won first place honors in the nonprofit Hilarity for Charity U competition, whose proceeds exclusively benefit the Alzheimer’s Association.
Martha Richardson, executive director of the Alzheimer’s Association Vermont chapter, was on hand for the celebration, which included a screening of Rogen’s latest film, “Neighbors, ” and a Q & A for the students who helped with the fundraiser. “It’s just amazing to see college students be so effective, strategic and thoughtful about raising awareness. And Seth Rogen’s desire to use his fame to raise awareness in this younger generation is so impactful,” she said.
The actor, comedian and writer visited Burlington for the first time with his wife, actress and writer Lauren Miller, after Pi Kappa Alpha Fraternity raised more than $27,000 to benefit the charity, which in turn benefits the Alzheimer’s Association. The event raised more than $128,000 overall, which will be used “to help families struggling with Alzheimer’s care, increase support groups nationwide and fund cutting-edge research,” according to a press release.
John Fox, a UVM student and winning fraternity Pi Kappa Alpha’s president, was inspired to spearhead the event locally in honor of his grandfather, who passed away from complications of Alzheimer’s disease in January. Fox’s friend and the vice president of the fraternity, Robert Castella, told the Observer there was “lots of grassroots fundraising, calling friends and family for donations,” on the part of the fraternity’s 80 members. “(Alzheimer’s) affects a lot more than we thought. We discovered that 11 members are directly affected by Alzheimer’s.”
He also cited some innovative efforts on the part of the group. Twenty-five Pi Kappa Alpha members did roadside cleanup in an industrial section of Williston in exchange for a $2,000 donation from Casella Resource Solutions. The fraternity also produced a talent show in which they recruited UVM students to perform, including fraternity brother Andrew Schwingel, who wore Spandex and a leotard to recreate a dance that he had done in high school three years earlier — his dance alone raised $1,000. (A video of his original dance is available on YouTube: https://www.youtube.com/results?search_query=Andrew+Schwingel+)
Their efforts and those of fellow students put the UVM fraternity in first place out of 270 student organizations nationwide. Castella said 60 percent of the funds raised by the fraternity stay in Vermont to support the local chapter of the Alzheimer’s Association.
Referring to the Alzheimer’s epidemic, Rogen noted that the road to change is paved with a change in attitude. “It needs to seem cool to care about it,” he said. “It will only end if young people are involved.”
An underfunded epidemic
Miller told the Observer that she and Rogen became involved with the fight against Alzheimer’s after her mother was diagnosed with early onset Alzheimer’s at age 55. Her parents were living in Florida when Miller and Rogen went for a visit after his hit movie, “Knocked Up,” came out. While there had been some evidence of memory impairment in past visits, this particular trip made her more aware of the rapid progression of her mother’s illness. Miller’s father had become a full time caregiver for his wife. “It was destroying him,” Miller said.
Miller and Rogen purchased a duplex in Los Angeles for her parents and hired caregivers who are with Miller’s mother on one side of the home 24/7. Miller’s father lives on the other side so that he can still be in daily contact with his wife, but has the benefit of assistance in giving her the care she needs. “The level of care is extreme. My mom is like a 130 lb. baby,” Miller said.
For his part, Rogen is extremely supportive of his wife and her family, and the couple is happy that they can use their notoriety to raise awareness about dementia. Rogen appeared before the Senate Appropriations Committee recently to speak about the realities of the disease and the “lack of hope” for those affected and their families. “Unlike the other top 10 diseases in America,” there is no cure or treatment for Alzheimer’s, he said.
Rogen noted that he wasn’t aware, until his experience with his mother-in-law, of how severe the toll is on the person with the disease. “I saw the real ugly truth of the disease,” he said. “My mother-in-law was a teacher for 35 years and forgot how to speak, feed herself, dress herself or go to the bathroom by herself, all by the age of 60,” he told the Committee.
He also became aware of the “shame and stigma associated with the disease,” and said the couple decided to take action, forming Hilarity for Charity, with the help of friends, to educate young people in particular about the true nature of Alzheimer’s and how it affects those afflicted, as well as their families, friends and caregivers. “Government needs to acknowledge how major an epidemic this is,” Miller said. “A major shift in the mentality of the government is required,” Rogen added.
Richardson echoed the couple’s sentiments. “We’ve seen what research in cancer, AIDs and heart disease has done to change the trajectory of those diseases. It’s now time to address Alzheimer’s in the same way.”
For more information on Hilarity for Charity, visit www.hilarityforcharity.org. For more information on the Alzheimer’s Association, visit www.alz.org.