Personal stories, legislative champions drive landmark success

It was an evening of celebration, tears and, of course, plenty of purple.

After a day of successful meetings on Capitol Hill, more than 700 advocates from all 50 states gathered at the National Alzheimer’s Dinner on May 17 to celebrate remarkable progress in the fight against Alzheimer’s and all other dementia, and to honor legislators on both sides of the aisle who have contributed to continued momentum in the cause.

The evening, part of the Alzheimer’s Impact Movement (AIM) Advocacy Forum, began with a warm welcome from host and emcee Richard Lui, a news anchor for MSNBC and NBC and an Alzheimer’s Association Celebrity Champion. Lui reflected that the past two years have been marked by loss for many — including that of his father, Stephen, who died in December after living with Alzheimer’s for eight years.

But it’s also been a time with many incredible gains. Thanks to the tireless work of legislative champions in Congress and a nationwide network of Alzheimer’s advocates, annual funding for Alzheimer’s research at the National Institutes of Health has reached a historic high of more than $3.4 billion, among other significant victories.

Alzheimer’s Association CEO and AIM President and CEO Harry Johns presented the Alzheimer’s Association Lifetime Leadership Award to Sen. Roy Blunt (R-Mo.). Blunt is retiring from Congress at the end of this term after a long career that includes a strong commitment to advancing the Alzheimer’s cause. He was instrumental in securing a more than seven-fold increase in federal Alzheimer’s and dementia research funding since 2011.

Blunt thanked advocates for their dedication and for sharing their stories, which he says truly make a difference in garnering legislative support.

“More and more people in Congress and on our committees have a sense of how important [this cause] is for so many people,” he said. “It’s been a great privilege to be a part of this cause.”

Steven Osgood, an AIM board member and a former member of the Alzheimer’s Association Board of Directors, recognized Rep. Darin LaHood (R-Ill.) as one of the recipients of the 2022 AIM Humanitarian of the Year Award. LaHood was an early supporter of AIM’s past legislative priorities, including the HOPE for Alzheimer’s Act, Improving HOPE for Alzheimer’s Act and the Younger Onset Alzheimer’s Disease Act. He is also one of the lead sponsors of the Comprehensive Care for Alzheimer’s Act.

Joe Arciniega, a member of the Association’s board and the AIM Leadership Society, presented the second 2022 Humanitarian of the Year Award to Rep. Paul Tonko (D-N.Y.). Tonko is a member of the bipartisan Congressional Task Force on Alzheimer’s and was a lead sponsor of the BOLD Infrastructure for Alzheimer’s Act, the Improving HOPE for Alzheimer’s Act, the Comprehensive Care for Alzheimer’s Act, and the recently introduced NAPA Reauthorization Act.

Tonko shared that he is grateful to the advocates who have moved him with their passion over the years.

“It’s been a very tender walk with many of you. You’ve shared stories that are painful to share. You reminded me that it’s OK, and essential, for government to have a heart,” Tonko said. “I am with you in this walk. I am with you, as you share yourselves, in a powerful format. Your heart is purple. The purple power is people power.”

Alzheimer’s Association President Joanne Pike, DrPH, presented the final award of the evening to Advocate of the Year Michele Castro of Macungie, Pennsylvania, who lost her mother, brother and two aunts to younger-onset Alzheimer’s.

“Michelle has worked tirelessly to promote the legislative efforts of the Alzheimer’s Impact Movement and brings new advocates to the cause through every channel she touches: work, social media, education programs and the Alzheimer’s Association Walk to End Alzheimer’s®,” Pike said. “She is someone others strive to emulate.”

“I knew that I had to make a difference so no other family would have to suffer the way mine has,” said Castro, who learned in 2015 that she carries a gene that causes Alzheimer’s disease. “Each loss made me stronger to advocate for those who can no longer vocalize for themselves. I have learned through my advocacy that speaking up and communicating the importance and need for support for our asks is essential to ending this disease.”

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