Actress and author Kimberly Williams-Paisley and her father, Gurney Williams, received the Alzheimer's Association Champion Award at the National Alzheimer's Dinner April 5 during the Advocacy Forum.
The Champion Award recognizes individuals whose actions have promoted greater understanding of dementia and its effects on diagnosed individuals, families and caregivers. Association President and CEO Harry Johns said Williams-Paisley and Williams have been true leaders in the fight against Alzheimer's and other dementias by speaking out about the primary progressive aphasia of Linda Williams, Gurney's wife and Kim's mother.
"I'm flabbergasted," Gurney said, accepting the award. "When I started caregiving for my wife Linda, I thought I was Superman. I thought I could do it all. Dementia is weird and clever about this. The symptoms accrue very slowly, and you think, ‘I can do this.' I thought I could beat the bad guy of dementia. It was Kim and her sister and brother who said, ‘We're losing you, too.' I was no longer Superman, and I had to let go."
Prior to the award presentation, Williams-Paisley told the crowd that her book about her family's experience — "Where the Light Gets In: Losing My Mother Only to Find Her Again" — was released today. "I can't think of a better place to be when the book came out than right here," she said. "You are the people making change happen."
Linda Williams was a successful fundraiser for the Michael J. Fox Foundation before her diagnosis in 2005. Williams-Paisley said her mother's indomitable spirit drove that success, and she thanked advocates for sharing the same determination.
"My mom sometimes failed at fundraising, but she got up and tried again, so I want to thank you all for your efforts for getting up again and again and again," she said. "I'm so inspired by the progress I'm seeing, and I'm so grateful for those of you fighting with all of your heart for people like me and my mother. I'm going to be cheering you on tomorrow."
Emceeing the event was Pamela Brown, CNN justice correspondent and daughter of Alzheimer's champion Phyllis George, former first lady of Kentucky, sportscaster and entrepreneur. It turns out this isn't the first time Brown has attended the Advocacy Forum: She went to the event years ago with her mother to honor her grandmother, Louise George, who had Alzheimer's disease.
"My mother acted as her primary caregiver," Brown said. "She once said, ‘To lose your best friend to Alzheimer's and hear them one day say to you, 'Now, who are you?' is the most heartbreaking experience anybody can have.' I know all of you are not strangers to that emotion. That's why it's so important to galvanize our efforts and fight this disease. This event may have changed and grown since I was here several years ago, but one thing has remained the same: the dedication and passion of all of you, the advocates who make up the Alzheimer's community."
Advocate Barbara Meehan of Wareham, Massachusetts, shared her reason for being at the Forum: her partner Faye, whom she called the love of her life. Faye was diagnosed with Alzheimer's in April 2008 at the age of 68 and died 17 days before the couple's 36th anniversary in 2015.
While Meehan was unable to change the course of Faye's illness, she honors her memory by fighting Alzheimer's.
"Alzheimer's is an equal opportunity illness," Meehan said. "It doesn't care if you're old or young. It doesn't care what color you are. It doesn't care where you worship. It doesn't care if you're male or female or gay or straight. It takes whomever it wants. So I will continue to do all I possibly can to see an end to Alzheimer's."
Patrick Peyton, Alzheimer's Impact Movement and Alzheimer's Association National Board member, introduced the evening's first recipient of the Alzheimer's Impact Movement Humanitarian Award, Sen. Roy Blunt (R-Mo.), chairman of the Senate Appropriations Subcommittee on Labor, Health and Human Services. The award recognizes public officials who have made a significant policy contribution to advancements in research, care and support for people with Alzheimer's disease.
Blunt led the effort that resulted in last year's historic $350 million increase for federal Alzheimer's research funding. The Association initially requested an increase of $300 million; directly due to Blunt's actions, Congress not only met the request but exceeded it.
"The real humanitarians here are Barb (Meehan) and all of the other Barbs who take care of people with this disease," Blunt said. He underscored the importance of building on the advocacy victories of 2015. "If you're going to develop a pattern, year two becomes essential. Do what you can to prove to Congress that this is a priority. This does matter and you matter."
The second Humanitarian Award went to Sen. Patty Murray (D-Wash.), the ranking member of the Senate Appropriations Subcommittee on Labor, Health and Human Services. Murray worked with Blunt on the critical funding increase and is also a co-sponsor of Health, Outcomes, Planning and Education (HOPE) for Alzheimer's Act, which would increase access to information on care and support for newly diagnosed individuals and their families, and ensure that an Alzheimer's or dementia diagnosis is documented in the individual's medical record. (Murray was unable to attend the dinner.)
Beth Kallmyer, Alzheimer's Association vice president of Constituent Services, presented the Alzheimer's Association Outstanding Advocate of the Year Award to current and past members of the Alzheimer's Association National Early-Stage Advisory Group. The award is given annually to an extraordinary Alzheimer's advocate who has shown outstanding leadership.
The Association established the National Early-Stage Advisory Group in 2006, made up of people living in the early stage of Alzheimer's and other dementias. More than 100 people have served on the group for one-year terms. Kallmyer said that while each advisor has brought unique qualities to the role, they share one important trait: the refusal to succumb to the stigma surrounding Alzheimer's.
"Instead of being silent, they have publically shared their diagnosis and experiences with Alzheimer's, changing public perception of what it means to live with the disease," Kallymer said. "Many people are still in denial of Alzheimer's and other dementias, dismissing the signs and refusing to seek a diagnosis. The National Early-Stage Advisors lead by example, bravely demonstrating the benefits to early detection, including access to available treatments, clinical trials, resources and the ability to plan for the future."
National board member Joan Uronis, an Advisory Group alumna, accepted the award on behalf of current and former advisors. Uronis reflected on how things have changed for people with Alzheimer's over the last decade.
"Ten years ago, people with the disease were not testifying before Congress, appearing on national morning shows or providing interviews to major global newspapers," Uronis said. "Ten years ago, we were not visiting regularly with elected officials. We were not asked to speak in front of audiences who wanted to hear our story. Ten years ago, we did not have the opportunity to create new resources for people living with the disease. We were largely silent — not because we wanted to be, but because we didn't have a vehicle. Now look at us and how far we've come. It's truly amazing."
Uronis mentioned that advocates living with Alzheimer's are playing a significant role in creating changes in the fight against the disease — and she vows these voices will continue to be heard.
"Life doesn't end with Alzheimer's disease. It's just the beginning of a new one," she said. "Participation in the National Early-Stage Advisory Group has been a huge part of empowering us all in that new life. The friendship and support we offer each other, the opportunities to reach and educate the public, the chance to shine a spotlight on the realities of this disease and motivate others to take action, have added purpose and meaning to our lives. Together, we have found our voice, and we will never be silent again."
Johns closed the evening by thanking advocates for all they've done and will continue to do in the fight against Alzheimer's. He rallied the troops by asking if they were ready for their Hill Day visits, quizzing them on Alzheimer's statistics, and received enthusiastic (and correct) answers.
"We can do this," Johns said. "We've already advanced this cause dramatically by working together in ways that are a model for any cause. That's a tribute to you and those across the country who are part of this. We can do it again, and we will do it again.