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Biogen aducanumab Aduhelm clinical trial participant Phil Gutis

Phil’s Journal: A Note on Gratitude and Giving

By Phil Gutis | November 29th, 2022

Journalist and Alzheimer’s advocate Phil Gutis, who is living with early onset Alzheimer’s, shares some wisdom this Giving Tuesday.

Another Thanksgiving has come and gone. After my diagnosis with early onset Alzheimer’s back in 2014, I frankly did not expect to be alive for Thanksgiving 2022. Based on the limited amount of information I had absorbed about early onset, I thought I had five more years — and many of those years would not be pleasant.

Obviously, I’m still here. And, obviously, I have much to be thankful for. Not only am I still alive, I’m actually living well with early Alzheimer’s. I have my husband, my family, my pets. I’m still writing, advocating and doing a bit of freelance work. Although I have my Alzheimer’s moments, all in all, life is pretty good.

But what I’m perhaps most thankful for is all the researchers who are working so hard to solve the puzzle of cognitive diseases and the advocates who are pushing for more funding for research. I’m thankful for groups like the Alzheimer’s Association and UsAgainstAlzheimer’s and the dozens of others who are working so hard on our behalf.

I’m thankful for my colleagues at Voices of Alzheimer’s, who have in a few short months turned an idea of an organization led by people living with Alzheimer’s into a reality. 

And, of course, I’m so very thankful for Biogen for introducing Aduhelm, the first disease-modifying treatment approved by the Food and Drug Administration for early Alzheimer’s. (I’ve been part of the clinical trials for Aduhelm for much of the last six years and fervently believe it has helped me a great deal.)

I’m thankful for the researchers at Eisai and Biogen for lecanemab, which showed even more powerful results than Aduhelm. I’m thankful for the scientists at Roche, who, despite reporting disappointing results with its drug gantenerumab, pledged to redouble their efforts to find a treatment for Alzheimer’s.

Despite much to be thankful for, now is not the time to sit on our laurels. We need to continue to push hard to stop the discriminatory treatment of people living with Alzheimer’s and other cognitive diseases by the people who lead Medicare and Medicaid, which has for more than a decade refused to cover FDA-approved diagnostics and treatments. We need even more funding for research. We need better recognition and support for the tens of millions of people who are the care partners of people living with Alzheimer’s. 

That’s why, on this Giving Tuesday — a global generosity movement unleashing the power of people and organizations to transform their communities and the world, according to givingtuesday.org — I’d urge all Being Patient readers to make a financial contribution to their favorite Alzheimer’s organization.

We’ve included links to several of them in this journal. Won’t you please take some time out of your day to give them a bit of financial support to thank them for all of their hard work on behalf of people living with cognitive diseases and their care partners?

After all, we’re living in a historic moment in time when we actually have some evidence that scientific breakthroughs are being made. What a reason to be thankful and to do even more.

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