45: #AlzForum Day 2&3

There is something incredibly important that needs to be said first and foremost here. And that is that the concept of a world without Sly Stone in it is nearly enough for me to give up the good fight. I can’t stress how important the man and his music have been to me over a great many years. He’s had his struggles (in fact, the recent movie about him is subtexted The Burden of Black Genius), but in his prime his works touched so many and raised so many thought provoking themes. Look back to post # 27: Blatant for my thoughts on his seminal album There’s a Riot Going On. Even though he hasn’t done much musically for years due to health and wellness issues, I will mourn his loss deeply. Also lost this week was Beach Boys founder and principal songwriter, Brian Wilson, who many herald as a genius on par with Stone. He was a principal character in the book “Glimpses”, which I wrote about in post # 40: Cluster@#&%. While I do not feel this as deeply for me, musically, I know his loss will be mourned by a great many people I hold dear. Our heroes are dropping, friends. It’s sad.

OK. Back at it! Day two began, as they often do, with breakfast. We then headed down to the main conference room to begin the panel discussions and other training sessions. Fascinating stuff. Brilliant and committed people spoke of their efforts to combat this disease, and people directly affected spoke of their ongoing struggles to cope with having, supporting or losing someone to, Alzheimer’s. Tears were shed. Sometimes quite copiously. Science was discussed. Advances in medical treatment - I’m actually

writing this (for the first time) from the infusion center where I’m getting dose number 21 of #Leqembi. Thank you, #Eisai, for your support of the AIM mission - and hey… I want in on one of those combo Leqembi/TAU trials you’re running. STAT. Reach out! And thank you #EliLilly as well. Even though I don’t take your drug, I appreciate your bringing it to market. Both of you - keep it up! And continue to ensure that we all have access to these drugs - but remember. We really want a cure. 30-35% slowdown is good - but not good enough. Researchers from Lilly and Eisai both participated in an extremely informative panel with other scientists and educated us on some of their plans.

We learned about several states that are doing phenomenal work in advancing dementia care and access to treatment. Despite the chaos that is erupting in our government, and whatever our Director of HHS says, Alzheimer’s is real, and we need to be continuing our efforts to combat - by research, development, trial, expanding access, creating and funding detection mechanisms and training current (and more) doctors, nurse practitioners and first responders. More on that during the day 3 and agenda sum ups.

We learned about the devastating effects of the proposed (and enacted) budget cuts, and the terrifying changes to the staffing at the NIH, HHS and CDC offices. Let’s make no mistake here. These (alleged) DEI firings are affecting the work being done. There are brilliant people of every gender, race and creed - and to wantonly fire any great mind because of the false belief that they were hired “just because” is gross. I may have said this in these pages before, but many of the students I worked with on my clinical trial were non-American and almost 90% of them were women. Many of the lead researchers I’ve spoken to have also been female and hailed from other parts of the world. These are the people LEADING. Not the ones being added to the workforce because there’s some law forcing it. And folks, ⅔’s of the people who have - or will get - Alzheimer’s are women. So directed testing for women is only scientifically correct to do. It’s not singling out men for non-inclusion (I’m all SWM, people, and I’m included!) - it’s recognizing where the need is and addressing it. What causes more women to get Alzheimer's, and what can we do to help WOMEN? Valid question. Not DEI. End of story.

I know that some of you who read this blog voted for the current administration, and I know that some of you are (or you know and care about someone who is) directly benefitting from medications developed with support of the NIA (among other things) and painstakingly tested in clinical trials, possibly by a woman and maybe by an immigrant. And if you don’t benefit now, there’s a good chance you will in the future. We all age. If you’re worried that Americans are being forced out of these research jobs, understand that even with the influx of immigrant scientists and women, there is still a dearth of labor in the lab space. If we want to change that, the fix is to fund better science education, give grants and make it compelling for students across the country to choose science (and the lonely science of research) as a career. Not to shut access down in favor of part time work in a factory. Make college affordable and focus more on science, medicine and other helpful things than on sports and financial management.

Along with these moments, there were times for photos, swag purchase (note the hat above…) and socialization.

After lunch, we went into several training sessions on the bills and appropriations we’d be addressing which included:

• FY26 appropriations for additional funding for research and development through the NIH, and for more funding for the BOLD act through the CDC which will create a robust health infrastructure and increase data collection and analysis.

• ASAP, which will, among other things, increase covered access to the new blood screening detection test that has just been approved by the FDA. This is a bipartisan piece of legislation.

• AADAPT, which will bring tele-training to doctors and more in rural and underserved areas to increase early detection. Remember reading early on in these very pages, about my struggles to find doctors who were trained to analyze the symptoms I was reporting, causing me delays in finding treatment. Now, Leqembi has only just been approved, so back then all I could have done, had I known, besides worry, was enact lifestyle changes and… ENROLL IN CLINICAL TRIALS. I spoke at length to an older (than me) gentleman who has, due to clinical trials, been on Leqembi for over 10 years! He just ran the Boston marathon, and was in fantastic mental shape. I also spoke to many who watched their loved ones decline with no intervention.

There are plenty of sub-topics to roll in here, including the cuts to the Affordable Care Act, rollbacks on Medicaid, funding cuts to colleges and student visa issues. It should be noted, that if clinical trials are cut, some patients might be left in mid-medical treatment - and worse off than they were to start with. If, for example, you (as I will) donate a body part to science, and it is not used for research in a timely manner, it will rot away and become wasted. If the methods of analysis are corrupted or discontinued, and trials are disrupted, medical research will be set back, perhaps for decades. These, as I’ve often called them, puerile actions by the current administration - while reversible when the political tide inevitably turns - will take years to bring back up to speed. Those of you who live in red states - I implore you to connect with your elected officials and urge them to stand up to these actions for the greater good. And those of you who live in blue states, don’t rest on your laurels either. There’s a lot going on in DC, and sometimes, as will be discussed later, a well intentioned politician has “bigger” fish to fry. But not much is bigger than our national health, is it?

We then had a banquet dinner, for which we dressed to the nines,

at which we gave out some awards and such. In my one sort of aghast moment, Representative Bill Cassidy (R-LA) was given a major award for his service to the community. And this opened up a line of thought for me on partisanship versus intent. Cassidy has been a long term staunch supporter of Alzheimer’s research and prevention. Yet I, uninformed as I am, only know him as the man who cast the deciding vote in favor of the man who will bring it all tumbling down, RFKjr. And as I spoke to my colleagues from the redder states who were in attendance, I learned that their senator (or rep) was very viscerally pro-Alzheimer’s cure and care. So how, then, do these people turn around and vote for legislation that is so against their beliefs? And how can we ensure that never again are our elected officials bullied into doing so. For me, the only answer is term limits - or a promise from the people that voted for them that if they don’t do what they stood for when they ran, they shall never hold office again. And voters must pay attention to the things that happen besides the issues they voted for. I guarantee you that many pro-gun-rights people who vote red because “They’re GONNA take our guns” have also been (and will be in the future) negatively affected by these health care cuts. That needs to mean something. Sure, you might be against transgender folks participating in sports, or even existing. You might be concerned about the alleged flow of drugs across the US Mexico border. You might be worried about your job being "taken away”. But again, I guarantee - you’re going to get sick and need medication. You’re going to need a doctor - and you’re going to want some assistance in paying for (and living with) whatever your diagnosis is. Do not vote against medical innovation and assistance ever again. I implore you. It’s a completely national need. And if you voted for this administration and are regretting that choice, or in any way displeased with the current events, get out there and advocate for change. Call and write your senator and let them know that you WON’T be voting for them unless they remove themselves from the cultlike behavior currently being exhibited. Talk to your friends and family and lead conversations towards some sort of sanity. Bring back the old republican party. Stay republican, just don’t stand for what’s happening now. And hope against hope that you don’t come down with some disease that doesn’t yet have a cure.

Back to the banquet - It was hosted by a guy I vaguely recognized. An actor named Diedrich Bader. I finally looked him up and he’s been in a ton of stuff, but I knew (and loved) him from one of the most imminently quotable movies of the 90’s, Office Space. He played a small but memorable role as the stoned next door neighbor, Lawrence.

Mr. Bader, who has worked tirelessly to support the cause, moved us (and himself) to tears discussing the death of his beloved father from Alzheimer's. He told the story of how, late in the development of the disease, his father taught him - again - how to shave. They each shaved their already grey beards together. He described that moment in vivid detail and how he learned the concept (which is used in improv comedy) of “yes, and…” as a way of connection. It was a wonderful moment.

Following dinner we had a group photo of the entire Mass/NH contingent, all decked out in our finery:

I could not post my day 2 thoughts in a timely manner, because I needed nothing more than sleep after the day was concluded. I’ll be back tomorrow (probably) with the report on the extremely excellent day 3 - Hill Day!!!!

And now the moment you’ve all been waiting for… Hill Day, 2025. Where 1,100 #Alzheimer’s Organization supporters and volunteers, besashed and bedecked in their purple best, stormed the houses of legislation. It started, once again, with breakfast at the hotel, after which we boarded buses to take us to the hill.

All of us were wearing our purple sashes and chanting things like:

What do we want?

A Cure!

When do we want it?

NOW!

It was a joyous and excitement-filled ride which terminated at the historic St Marks church, where some people had chosen to leave their luggage in preparation for departure. From there it was a short walk (interrupted by a woman who asked what we were doing, and then clapped for us as we streamed by) to the steps of the Capital building, where the MA/NH early onset group posed for pictures. Note the raised fist!

Then the entire MA/NH contingent got motivated:

And then there was this (soon to be) iconic shot of your (not so) humble narrator:

From there, we disbursed to our first meetings of the day. Ours was with Democratic Senator Edward Markey, which we got into after waiting on a long line of purple clad advocates.

who unfortunately (actually none of them..) could not be there, but assigned us to meet with his legislative assistant. I was chosen to tell my story as an opening gambit;

(sorry about the audio here!). But, as you can hear (or read) the aid was keyed in and asked insightful and caring questions. We did not feel “blown off” in the least - and we know that Sen. Markey has a close personal connection to the cause. All in all, my very first meeting in Washington D.C. was a good one, and I felt great about it. Afterwards, we gathered with the aids for a photo outside the office.

We had a speedy walk - in a much smaller group - over to the Representatives office building to meet with our local Rep, Richard Neal - or more specifically, his senior legislative aid, Abby McGovern. Our meeting took place on the exterior balcony of his office suite. It was a beautiful morning. Picture worthy, I must say.

I was chosen here to be the team lead, along with my long suffering wife, Wendy - who absolutely killed it! She brought the house (and herself) to tears with an impassioned plea for continued (and greater) work to help fund research for a cure. I could not be prouder of her - and I wish I had a video, but I don’t. I do have a very short clip of me, though!

Our co-presenters, Jessica, Katherine, Lainey and Joe (who were also volunteering to be with us to help out because they had spare time - they don’t even live in the district) did really well with their parts - we deviated a bit from the script - all of us continued to hammer home the impact that this disease has on us personally. Lainey works for the organization - she’s the one who brought me on the trip and I can’t thank her enough. The other three were all volunteering in honor of passed family members, and were brave and articulate as they shared their personally devastating stories, while making a plea for continued support and future funding. I was honored to meet them, and we ended up hanging out for the rest of the day. In a serendipitous manner, Katherine just emailed me and let me know of an article she wrote on many of the topics touched upon here. It’s behind a paywall, so I uploaded it to my Google Cloud, and have linked it here for you. Give it a read. If you’re a Boston Globe subscriber, read it directly on their site here and give her the clicks!

Our final photo was stunning:

Abby was thoughtful, kind and well versed with our mission and goals, and I thank her for her time. I look forward to future encounters with Rep. Neal back in the district - and will do what I can to work with him on this in the future.

The five of us (Lainey had another meeting for her district) went down to the crowded house cafeteria for lunch, before strolling through the capital grounds - back to the senate building to meet with Adam Abadi, the legislative correspondent from Senator Elizabeth Warren’s office. We had been hopeful that we’d meet Warren, because we really respect her work - but she was busy (turns out she was hand delivering 1000 letters from educators protesting cuts to the DOE, so… that’s a valid miss, Sen. Warren. Forgiven!) There were a lot of us there again

and our meeting was actually held in a hallway due to space constraints. We have been told that this was not a snub, but par for some of the courses. And yet, it diminished the connection, and that’s too bad. Understandable, but disappointing nonetheless. This was the one time that I personally felt a lack of interest from the aid. Maybe because the cause is so dear - and I believe that Warren should be fully keyed into it - or maybe because the fights going on - and all of our meetings emphasized this - are so huge and so impactful, and the fractures are so deep and so vengeful, that emotional space needs to be parsed in a different way.

While waiting for our time to meet with Sen. Warren, we sat in the lobby, and who should walk by but Republican Senator Rick Scott, who is very tied into the current administration. I took my deep learning from yesterday regarding the nature of partisanship and intent and went up to him to shake his hand and thank him, while looking right in his eyes, for all his support for our cause. (I had made a promise to myself that I would be purple for this trip and recognize the need to not be antagonistic, despite any deep-seated personal feelings I might have). I felt both good and dirty after that. Even now, in hopes of gaining readership and traction within the organization I’ve come to care so much about, I’m curbing my baser instincts. Look at me! I’m all grown up!!!!

And then, the day on the hill was over. We shared an Uber with Jessica and Katherine back to the hotel to pick up our bags - and then an Uber to the airport for our flight home. One last encounter to note. We went to a diner at the airport. By the very nature of our existence, Wendy and I struck up a conversation with our waitress, who had - it turned out - recently lost her mother to Alzheimer’s. She had multiple other family members with other forms of dementia as well. She ended up sitting with us for a spell (while doing her best to not ignore her other tables) and we had a lovely chat. I gave her a card with the blog link, and, Cheryl, I hope you’re reading. Thanks for a great conversation. Be well, and thanks from all of us for caring so well for your dear mother.

And finally, if you EVER meet anyone who looks at you like this - Marry them!

Thank you, Wendy, for your support, love, care and presence in my life.

Thanks for reading,

Dy.