How I Became an Alzheimer’s Advocate and Ended Up as “Barb”

How I Became an Alzheimer’s Advocate and Ended Up as “Barb”


So, a great thing happened to me in early 2018. I was asked by the national Alzheimer’s Association to serve in a special volunteer capacity for them (actually, for their advocacy group AIM, which stands for Alzheimer’s Impact Movement).

Specifically, they asked me to be their Ambassador for Florida Congressional District 3, represented by Congressman Ted Yoho. It’s my role to meet with the congressman and to advocate for critical legislation and increased funding for Alzheimer’s research at the National Institutes of Health (NIH). AIM sets the goals, and I educate and persuade Congressman Yoho to get behind those goals.

My first response when they asked me to do this was, “Wow, what a great cause,” and then, “I’m not exactly an expert at convincing politicians to do things – are you sure you want me?”

That lack of experience didn’t faze them. They wanted someone with a story to tell and a passion for ending Alzheimer’s, and they’d seen my blog and my advocacy tweets, and they had a hunch I could do a good job of it.

“They” in this case is Evan Holler, public policy manager for the Central and North Florida chapter of the Alzheimer’s Association, who has since become my mentor in all things advocacy. Evan’s talent – no, scratch that – his superpower, is inspiring people to do things they might ordinarily be afraid of doing. He kept telling me  that with just a little training I could do it, and I looked over the amazingly clear and impactful materials that the Association puts out for advocates, and in less than a week, I had said, Yes.

Left to right: Michelle Branham, Evan Holler, Congressman Yoho, and me at a district meeting in February 2018. The congressman asked lots of focused questions about the status of finding a cure for Alzheimer’s, and we urged him to support the BOLD Infrastructure Act, which will declare Alzheimer’s a national public health issue.

I have since found out that Evan’s role model in all this is HIS boss, Michelle Branham, vice president of public policy at the CNF chapter.

“I just tell you what Michelle told me when I started out,” he said to me the other day. “It’s all her.”

Michelle’s method works. It’s all about empowering people.

Since I said “yes” to becoming an ambassador, I’ve met once with the congressman (with Michelle and Evan leading the way, see photo above) and several times with his staff, both in Gainesville and in DC. It’s been a privilege to serve as a voice for the 540,000 Floridians with Alzheimer’s, whose safety and wellbeing depend so much on the actions that our federal and state governments take. And there is a lot that I want to write about those experiences, especially the three-day AIM Forum that I just came back from, in DC.

But I’ll save that for other posts and end with an unexpected development that may seem small to other people but is pretty significant to me.

I’ve become known in the Alzheimer’s advocacy world as “Barb,” a name that I haven’t gone by since childhood.

It’s because of my Twitter handle:  BarbDrake@perualz

I’m Barbara on other social media, but because I wanted my Peruvian Alzheimer’s Adventure Twitter account to focus on Peru and Alzheimer’s, and not on Barbara Drake The Writer, I shortened my handle to BarbDrake. It was something I did at the keyboard and forgot about.

Then I got to Forum, in D.C.

“It’s Barb from Twitter,” some of the South Florida chapter women said.

“So glad to finally meet you, Barb,” a Twitter friend from Kentucky said when we first hugged in the DC ballroom.

“This is Barb,” Evan said, introducing me to some of the 80 advocates from Florida who had shown up to turn the Capitol purple June 17-19 (purple is the color of Alzheimer’s advocacy).

I was stunned. Barb was what people had called me in elementary school. It was a type of shorthand – or the name of that nerdy best-friend character on Stranger Things that gets eaten by the monster.

The uber Barb: Barb Holland, from Stranger Things. Those glasses. Nuff said.

Did I really want to be known as Barb?

I went with it.

So, now several hundred people know me as Barb. Apparently, Evan has rebranded me, and I think I’m okay with it.

What do you think? Should I stick with Barb or go back to Barbara for the book proposal I’m writing?

I’m all ears.

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