Category Archives: Drugs

Precision Medicine

Rob and I stayed on west coast time during our visit to Boston, lazily ordering room service on our first couple of days because going outside and fending for ourselves would have required too much energy. This is why I was still in pajamas, and showing a rather inappropriate amount of leg when the server brought breakfast up at 1pm on Saturday. This isn’t like a sexy thing. I was in my wheelchair probably scrolling through my Facebook feed while Rob watched football. And you know what? It was perfect. The server may have found it even more perfect if I’d been wearing pants, but you can’t please everyone.

As I’ve already reported, we were in Boston for the ALS TDI party, but we were also there so that I could participate in TDI’s Precision Medicine program. On Monday morning, we got up “early” aka 9:30am, and headed down the street to Massachusetts General Hospital. The first part of the program involved having blood drawn, followed by a small skin biopsy, during which they removed a part of my arm that was about the size of a pencil eraser. The whole thing took 10 minutes.

Then we were off to ALS TDI’s offices in Cambridge. Read More>

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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>

|Categories: Cure, Drugs, Life, Progression, Research | Tags: , , , | Permalink