April 8, 2014
Candy Crowley, CNN's award-winning chief political correspondent, delivered the 2014 Alzheimer's Association Advocacy Forum keynote address April 8 to a packed house of nearly 900 dedicated Alzheimer's advocates, kicking off the general session.
Crowley admitted that she was somewhat hesitant about sharing the story of her mother's battle with Alzheimer's, even as late as the night prior to her remarks. "I'm very protective of my mother's story and wasn't sure about telling it," she said. "But then I thought you're a nice, safe group to tell it to."
The tale is familiar to those in attendance. Crowley's mother still recognizes her, but she also has moments where she thinks Crowley is no longer living. They have conversations, but they're fleeting. Her mother is present but is also gone; the woman who Crowley said knew all the answers is now asking the questions.
"The ups and downs of this disease are astonishing to me and so tiring, as I know all of you know," she said. "I miss my mother most when I'm sitting across from her. One day at lunch she was crying, and I said, ‘I'm not going to come see you if you cry all the time. Just tell me what I can do to fix it.' She said, ‘I just don't want to leave you.' How do you respond to that? I said, ‘I don't want you to leave me, but it's OK. I'll be fine.'"
Crowley related another anecdote about a potential sign that something was happening with her mother's memory. On a trip to Europe, her mother, who served as the duo's navigator, was studying a map; problem was, the map was upside down. Thinking back, Crowley wonders if she and her family failed to notice the signs of her mother's dementia.
"All I ever do is question whether what I did in the past was right, whether what I'm doing now is right and what I will do in the future that will be helpful to her," she said.
Crowley then offered advice to advocates on how to approach their Hill Day visits. Commenting on how two-thirds of Americans with Alzheimer's are women, Crowley said, "Don't hesitate to make this a women's issue. You hear about the war against women, but there but for the grace of God is that congressperson with their mother, wife or daughter who could get the disease."
Crowley closed her remarks by saying that personal stories can make the difference if legislators are hesitant to commit to the cause.
"You can have all the facts you want at your fingertips, but I would put all those facts and figures on a sheet and then tell them about the person you're losing or have lost and what it's doing to your life," she said. "And then tell them what you want and what you need.
"Take your story to Capitol Hill and make legislators feel your hopes and fears. I encourage you to open yourself up as much as you can when you get there. And do not give up. You're doing God's work. I know that from the heart."
Dr. Margaret Hamburg, FDA commissioner, then sat down for a Q&A with Harry Johns, Alzheimer's Association president and CEO, to discuss a number of issues related to the relationship between the Association and the FDA, as well as the future of Alzheimer's treatment and prevention. One area she mentioned as key is the engagement of the Alzheimer's patient community and the broader caregiver population, in particular the willingness to be involved in clinical trials.
"People who participate in studies are really performing a service to humankind," she said. "That's how we get meaningful and enduring knowledge (about avenues to address)."
Rep. Paul Tonko (D-N.Y.) fired up the crowd with his emotional comments. Tonko is an original sponsor the recently introduced Alzheimer's Accountability Act, which authorizes the National Institutes of Health (NIH) to submit a Professional Judgment Budget to Congress justifying funding for critical Alzheimer's research.
"I've watched family members and friends walk this tough, tough walk and learned how painful their journey is," Tonko said. "I've had people tell me at events that they've mourned twice — once when they determine what is going on and they see their loved ones lose their identities to the disease, and again when the people die.
"I commit to you every ounce of my intellect and energy to get the work done on behalf of the Alzheimer's Association," he continued. "For every dollar that we invest in care, less than a penny's worth is going toward a cure. It has to be about both care and a cure. We need to do more. We will find a cure, and we will make it happen with intelligence and heart."
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Save the date
2016 Alzheimer’s Association Advocacy Forum
April 4-6, 2016
Washington Marriott Wardman Park