During the National Alzheimer's Dinner at the 2018 Alzheimer's Association AIM Advocacy Forum on June 18, advocates celebrated victories from the past year and honored outstanding Alzheimer's heroes.
Richard Lui, MSNBC anchor and dedicated Alzheimer's Association Champion, emceed the event. At last year's Forum, Lui related his family's experience in caring for his father living with Alzheimer's, including Lui's cross-country flights every week to help. He said his father is now 100 pounds lighter and unable to walk.
"It's been a tough year for us as we've seen him go in and out of the hospital the last three or four months," Lui said. "But we've lived through this together, all of us, the ups and downs along the way. Together is the word. There is only together."
Pam Montana, a member of the Alzheimer's Association Board of Directors and a National Early-Stage Advisor, shared why she's an advocate. At the peak of her career at Intel, Montana began to struggle learning new information and remembering conversations. After several years of testing and increasing memory problems, she received a diagnosis of younger-onset Alzheimer's.
"By nature, I'm a doer, and sitting around was not an option," Montana said. "I saw no other alternative than to jump in with both feet and go back to ‘work' to raise awareness of Alzheimer's and reduce the stigma for others. I now had a new job — a job with real purpose.
"I know that my story makes a difference. I know sometimes it's hard to look at me and realize that I have Alzheimer's. Sometimes it's hard for me to look at me and realize I have Alzheimer's. My job is to educate, stay strong and reduce the stigma of this disease."
AIM Board Member Patrick Peyton presented the first of the night's Alzheimer's Impact Movement Humanitarian Awards to Sen. Susan Collins (R-Maine). The Humanitarian Award recognizes public officials who have made a significant policy contribution to advancements in research, care and support for people with living with Alzheimer's or other dementias.
Sen. Collins has led efforts to pass vital legislation, including the National Alzheimer's Project Act, and rallies her colleagues each year in support of increased Alzheimer's research funding. She's the lead Senate sponsor of the bipartisan BOLD Infrastructure for Alzheimer's Act (S. 2076/H.R. 4256), which would create a nationwide Alzheimer's infrastructure to implement interventions focused on public health issues, such as increasing early detection and diagnosis, reducing risk and preventing avoidable hospitalizations.
Sen. Collins' advocacy has deeply personal roots.
"Sadly, my father passed away just a few months ago," she said. "He was diagnosed with Alzheimer's disease late in his life. Alzheimer's also claimed the lives of two of my uncles, cousins and my grandfather. This personal experience has only strengthened my resolve to continue increasing biomedical research dollars to find a cure, while also focusing legislative efforts to build the infrastructure for care that our communities need to support persons living with dementia and their families."
2018 Forum Chair Lou Holland presented the evening's second Humanitarian Award to Sen. Catherine Cortez Masto (D-Nev.), also a lead Senate sponsor of the BOLD Infrastructure for Alzheimer's Act. In addition, she serves on the Senate Special Committee on Aging with Sen. Collins.
Cortez Masto told a story about her grandmother, who died from Alzheimer's. After her death, the family found a letter in one of the large number books she'd accumulated.
"We opened it and it was from a senator who thanked her for her help during his winning campaign," Cortez Masto said. "It was from Harry S. Truman. We all have family members who have stories, individuals who've led full lives. This horrific disease takes them from us. It's why I believe in what you're doing to find a cure and to support caregivers."
Lui presented the Young Advocate of the Year award to actress and Alzheimer's Association Celebrity Champion Alexandra Socha. The Young Advocate Award is given to a member of the next generation of Alzheimer's advocates who is dedicated to raising awareness of Alzheimer's and the cause among a younger audience. Socha is an active advocate and last year performed a headlining cabaret show in New York City to raise money for the Alzheimer's Association The Longest Day®.
Socha's mother was diagnosed with Alzheimer's in 2003 at age 50 and when Alexandra was 12. She was placed in a care facility in 2014 and, no longer able to walk or feed herself, is now in hospice care at age 66. Although her mother doesn't know about her award, Socha believes she'd be proud. She also thanked her family in attendance for the sacrifices they've made so that she could pursue her acting dreams. Socha said she advocates for people who don't have access to same support and resources in their fight against Alzheimer's.
"I chose to add ‘advocate' to my résumé, and it's better to me than any Broadway credit, so that I can speak up for those who don't have a voice," Socha said. "I want this disease destroyed. I'm so over it. I'm so over it. I look forward to the day where we don't have to have this event because Alzheimer's has become only a memory."
Academy and Tony Award-winning actress and Alzheimer's Association Champion Marcia Gay Harden also addressed the crowd. Harden's new memoir, "The Seasons of My Mother," depicts the unique creative bond she has with her mother and how they're facing Alzheimer's together. Harden's mother, Beverly, was diagnosed with Alzheimer's disease in 2011.
Harden said the essence of her mother remains, and while she's grateful for that, it's sometimes of little comfort. Fighting Alzheimer's helps Harden cope.
"We know that Alzheimer's is a disease where you can't really make lemonade from lemons, and I don't want to. I want my mother back," she said. "I know I can't have her back. So I'm advocating for her, and for millions like her and for myself, so that my children don't have to tell me who I am."
Via video, Rep Mike Quigley (D-Ill.) presented Dani Jachino with the Alzheimer's Association Advocate of the Year Award. Rep. Quigley said his "constituent and friend" is an inspiration. Jachino was one of the first advocates to join the Ambassador program in 2010.
Jachino has been an advocate since 2000, when her 91-year-old mother was diagnosed with the disease. Upon receiving her award, she said, "You're all advocates of the year. You're the reason I keep coming here. We do this together, all of us."
Lui invited Alzheimer's Association and AIM President and CEO Harry Johns to stage, but Johns had a surprise: He honored Lui with the Alzheimer's Association Champion Award.
"You've used your visibility as a journalist to not only bring attention and awareness to the fight to end this disease but to the challenges faced by so many family caregivers as well," Johns said. "When we call Richard and say we need his support, he's there. Richard is a model of showing up and speaking out, If everyone followed his example, I have no doubt our ability to teach others about this disease and compel them to take action would increase tenfold."
A touched Lui said, "I love all of you guys. I love the organization. It's meant so much to me personally. I cannot thank you enough."
Johns concluded the evening by askin"g advocates if they were ready to go to the Hill on Tuesday. The answer was a resounding, "Yes!"
"Use the facts and you can be persuasive," he said. "Tell your story and you can be inspiring. Go to the Hill tomorrow and inspire legislators and their staff so that we can see that first survivor of Alzheimer's and many more."