Men and women in purple shirts gathered on the crowded concourse at Nassau Coliseum after the first period of the New York Islanders game on Jan. 3. Some were meeting for the first time, but they didn’t hesitate to start sharing stories about what had brought them there as they headed back into the arena.
Once inside, they were captured on the JumboTron, an island of purple in a sea of blue and orange as a voice on the public address system said, “The first person to survive Alzheimer’s disease is out there,” and then introduced the group: Members of the Long Island chapter of the Alzheimer’s Association.
The nonprofit has hosted the Walk to End Alzheimer’s in cities across the country since 1989 to raise funds for Alzheimer’s research. The Long Island chapter has organized walks in three locations, with its first walk in East Meadow’s Eisenhower Park last fall. It was recently named an Islanders charity partner, and the team and the association co-hosted an Alz-heimer’s Awareness Night at the Islanders’ game against the Chicago Blackhawks.
The partnership began in December 2017, a month before now 21-year-old Islanders forward Anthony Beauvillier lost his grandfather Jean Cardin to the disease. Ever since, Beauvillier has collected $100 to donate to the association at each home game, and has invited a local family who has been impacted by the disease to be his guest and hang out with him after the game.
“I just wanted to use my range the best way I could to spread awareness and raise some funds to find a cure to end this disease,” Beauvillier said, adding, of his guests, “It’s been great just having the chance to talk to them and hear their stories.”
His own story, he said, isn’t that different from those told by many others who have cared for loved ones with Alzheimer’s. His grandfather attended most of Beauvillier’s games before he was diagnosed with the disease five years ago, but eventually no longer recognized him.
Beauvillier also watched his grandmother Ghyslaine Cardin, Jean’s wife, succumb to the illness. She is currently being cared for in a nursing home in Beauvillier’s hometown in Quebec.
Robert Pyryt, of Seaford, and his son Frank, 13, were Beauvillier’s guests of honor at the Islanders’ game against the Pittsburgh Penguins on Dec. 10 at Barclay’s Center in Brooklyn. Frank’s grandfather, also named Frank, died last year at age 92 after living with Alzheimer’s for 13 years.
“He forgot all of us, and eventually forgot my grandmother,” said Frank’s sister Alexa, 27. “It was very textbook Alzheimer’s.”
Alexa explained that the elder Frank Pyryt’s first symptom was difficulty reading the news each morning. Then, on walks around his neighborhood, he had trouble remembering where he was and how to get home. A native of Poland, he began forgetting English, and eventually spoke only Polish.
Alexa and her sister Leah, 23, are both nurses at Nassau University Medical Center in East Meadow, so they knew how to care for their grandfather, Alexa said. He stayed in his home until he died, but was regularly visited by a doctor as the disease progressed.
In 2016, Alexa began taking part in the Walk to End Alzheimer’s in North Babylon’s Belmont Lake State Park, and joined a team of 20 people who called themselves Dziadzi Sunshine. Dziadzi is Polish for “grandpa.”
“It was a real family effort,” Alexa said. “. . . [Frank’s] only memory of his grandfather is him battling Alzheimer’s. That’s all he ever knew. He’ll never know who he was before.”
Her brother is an avid Islanders fan, she said, and was excited to meet Beauvillier. He and their father, Robert Pyryt, had also attended Alzheimer’s Awareness Night at the Coliseum the previous week.
After the Jan. 3 game, Beauvillier met with Mary Ellen Warner, of Bethpage, and her 8-year-old son Ryan. Both have taken part in the Walk to End Alzheimer’s at Belmont Lake State Park for three years as part of a team called Joe’s Alz-Stars, named after Warner’s father, Joseph Hendrickson, 72.
The Alz-Stars, who raised over $4,500 at the 2018 walk, are made up of employees of the Bellmore School District, where Hendrickson was director of operations before his diagnosis, and the Syosset Fire Department, where he was a member for 50 years.
Hendrickson retired from the Bellmore district five years ago, and within a year he developed Alzheimer’s. “He saved a lot of his life for retirement, but it never really happened,” Warner said.
Hendrickson, who served in the Marines during the Vietnam War, now lives in the Long Island State Veterans Home in Stony Brook. He recognizes Ryan Warner and Ryan’s 6-year-old sister, Alexa, but has lost his ability to speak. “When we say I love you, he nods,” Mary Ellen Warner said. “There’s a little piece of him still in there.”
She said she knew her support for the Alzheimer’s Association wouldn’t save her father, “but I really hope the research money goes toward saving another family from this.”