A capacity crowd of over 1,200 dedicated advocates gathered at the National Alzheimer's Dinner April 1 to honor leaders who work tirelessly in the fight to end Alzheimer's and to celebrate advances made over the past year.
Actress and Alzheimer's Association Celebrity Champion Ashley Williams emceed the event, part of the 2019 Alzheimer's Impact Movement Advocacy Forum.
After noting achievements such as a record $425 million increase in federal Alzheimer's research funding and the BOLD Infrastructure for Alzheimer's Act being signed into law, Williams shared that her mother, Linda, who died from Alzheimer's two years ago, would've enjoyed the dinner — for the party and also to feel the advocates' collective energy.
"I wish I could tell her about the hope and the good news to come," Williams said. "I wish I could tell her about the motivation and passion of the warriors in this room. I miss her, but in moments like this, in company like yours, I find her again. I see her in your ingenuity, perseverance and success. Thank you for bringing her back to me tonight. She would love you."
Actress and Alzheimer's Association Champion Alexandra Socha, recipient of the 2018 Young Advocate of the Year award, presented the 2019 award to Aaron DeNicola of New Jersey for his dedication to raising awareness of Alzheimer's among a younger audience.
A junior in high school, DeNicola advocates in honor of his grandmother, Regina, who has been living with frontotemporal dementia for 11 years. In the past year, the tenacious DeNicola has visited Rep. Josh Gottheimer (D-N.J.), who thanked him via video, six times. He participates in the Alzheimer's Association Walk to End Alzheimer's® and organizes an annual basketball tournament to raise funds and awareness to fight the disease.
"One of the things my grandmother always taught me was to do everything in my power to help others, no matter what," DeNicola said. "There is nothing I can do to cure her disease today … But that's the thing about advocacy. In the face of this feeling of powerlessness, I could join this fight. I may not be able to cure her disease, but I can do something to move us forward toward our vision of a world without Alzheimer's."
Williams presented the Advocate of the Year Award to Cindy Harris of Alaska. The honor recognizes an advocate who goes above and beyond in fighting Alzheimer's and supporting families facing the disease.
Harris became involved in the cause for her mother and her three aunts, all of whom died of dementia. An Alzheimer's Association Ambassador to Sen. Lisa Murkowski (R-Alaska), Harris has helped position Sen. Murkowski as a supporter of the cause. She also raises funds and chaired the first The Longest Day® event in Alaska.
After a video message of congratulations from Murkowski, Harris commented on how much she values serving as an advocate. She called the Advocacy Forum "the most emotionally inspiring event I've ever attended."
"I love every empowering moment of it," Harris said. "It's wonderful to be part of this advocate community fighting back against this terrible disease."
Tom Doyle of Chicago, accompanied by his husband and care partner, Levi, shared why he's an advocate. A former teacher, principal, superintendent and university professor, Doyle's life was turned upside down when he was diagnosed with Alzheimer's, but he resolved to take action.
"I was devastated, and for a year and a half, I moved through the stages of grief," said Doyle, who is also living with Parkinson's disease. "But slowly, with the support of Levi by my side, I began to adjust. I recognized that I could find a new sense of purpose, meaning and joy for my life … I may have Alzheimer's, but Alzheimer's does not have me."
Emmy- and Golden Globe-nominated actress and Alzheimer's Association Champion Kate Mulgrew gave the evening's keynote address. Her book "How to Forget: A Daughter's Memoir" recounts her journey of caring for her father, who had lung cancer, and her mother, who had Alzheimer's.
"My mother was never unkind, but when put upon, she could wield her wit with a deftness that often left [her children] absolutely bewildered," Mulgrew said. "Frequently, all seven of us ganged up on her, demanding to know who she loved best. Closing her book, she would look at us carefully and say, 'I love all of you, but I like some of you more than others. You know who you are.'"
After her mother died, Mulgrew said, "I took myself to the west of Ireland where, in a remote house overlooking a beautiful lake, I spent three dark and intensely lonely winters trying to understand why the disease that afflicted my mother had threatened to obscure the memory of a woman who must not be erased."
Alzheimer's Association and Alzheimer's Impact Movement President and CEO Harry Johns closed the evening by reminding advocates to tell their stories when meeting with legislators on Capitol Hill on April 2. Though the successes are numerous, the fight against Alzheimer's continues.
"We should be really proud of what we've accomplished but not satisfied," Johns said. "We'll ask our members of Congress to also be proud but not satisfied. We will succeed in achieving our vision of a world without Alzheimer's. The question isn't if — the question is when."