Category Archives: Research

Notes on a Party

The Westin Copley Place in Boston was the location for this year’s ALS TDI White Coat Affair, a dinner and fundraiser that followed the organization’s 10th Annual Leadership Summit last week. Rob and I skipped the week of summit meetings, but showed up unfashionably on time for the party on Saturday night.

Corey Reich was sitting towards the entrance when the event began, looking his usual dapper self in a striped tie. I don’t like to hog Corey at these things, because I’m lucky enough to get to see him and his amazing family with some regularity back home.

I was introduced to Ellen Corindia, who’s had ALS for thirteen years and who uses a computer screen to communicate. Despite being in a wheelchair, Ellen went skiing with her partner last winter. They showed me the video, him skiing behind her, guiding her chair as the two of them zoomed down the mountain. Read More>

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Downgrading a Deadly Disease

“HIV is certainly character building. It’s made me see all of the shallow things we cling to, like ego and vanity. Of course I’d rather have a few more T-cells and a little less character.” —Randy Shilts, author of And the Band Played On and The Mayor of Castro Street

I recently finished reading Season of the Witch: Enchantment, Terror and Deliverance in the City of Love. David Talbot’s history of San Francisco is dark and stormy, frighteningly full of events that belie the free-loving-60s-hippie spirit the city is known for.

Among the stories recounted in the book is that of the HIV/AIDS epidemic that turned formerly fun, flamboyant neighborhoods into ghost towns. The gay population of San Francisco—of the country, really—was hit the hardest; healthy people struck down in their prime. That felt familiar.

I know that AIDS and ALS are very different. ALS is not contagious, and it’s not an epidemic. There are so few people who have it, in fact, that it’s considered an orphan disease, and commands very little attention from the NIH or the public. We all know this, just as we know that after this summer’s Ice Bucket Challenge, the game briefly changed for ALS.

But it takes a lot of money and a lot of attention to impact a fatal disease. Read More>

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ALS By Any Other Name

It seems like practically overnight, thanks to the #icebucketchallenge, no one is referring to ALS as Lou Gehrig’s Disease anymore. There are still the articles that lead off with the seemingly requisite “better known as Lou Gehrig’s Disease,” but as someone who reads the vast majority of what is written about ALS, I’m noticing a change in the language. This is a real victory for ALS awareness, successfully escorting the disease into the 21st century. But there is still work to be done.

Lou Gehrig has been The Face of ALS for 75 years. And during that time, there has been minimal progress towards viable treatments and a cure. Part of this is because the disease is rare. Part of it is because it wasn’t resonating with people as a contemporary issue to address. Now, suddenly, it seems to be resonating.

The ALS Association and all other organizations who are using Gehrig’s name and image to encourage awareness and funding for this devastating disease must take notice of this shift in the landscape. Separating ALS from Lou Gehrig should be an easy transition now that it’s actually—finally—ALS that people are talking about.

Identifying a disease with a specific person who died of it before World War II does a disservice to those who are currently living with said disease. The further we get from Gehrig’s untimely death in 1941, the fewer people who are familiar with his story. I know that’s hard to understand if you are well aware of who he was, but walk around, ask some young people, maybe hit up some folks who aren’t big baseball fans, and see what you discover. Read More>

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