And speaking of the Forward … what I was up to

I don’t really like stuffing my articles in your faces, but I think this time, it’s worthwhile—I’d like as many people as possible to know about the subject. The pieces I worked on for the Forward were about Tay-Sachs disease.

Tay-Sachs is a rare fatal genetic disease that develops from an enzyme deficiency. But it’s less rare in Ashkenazi Jews (1/27 are carriers), Irish-Americans (1/50), and Cajuns (carrier status means carriers of the recessive gene. One in four children of two carriers will have Tay-Sachs). It’s notorious for taking infants away from new parents. Since it’s so rare, it’s often misdiagnosed–especially Late Onset Tay Sachs, the least common form of this disease. Late Onset Tay-Sachs (LOTS) is usually not fatal, but also results in neurological degeneration.

I started researching Tay-Sachs when my editor assigned me to the disease for the special genetics issue. But as I started speaking to interested parties, I discovered the struggles that are fought by family members and advocates who are tirelessly searching for a cure. For example, I spoke to Ken Bihn, an Ohio accountant-turned-foundation-starter whose daughter’s diagnosis with juvenile onset Tay-Sachs changed his life. He told me he’s promised her to fight for Tay-Sachs, an oft-neglected disease, even after he loses her.

Ken Bihn with his family. Daughter, Dakota, in the front. He says that though she's lost muscle mass, she lifts people with her strength, cheer, and spirits. His foundation is Cure Tay-Sachs.

I also spoke with Vera, a 36-year-old LOTS patients with two degrees from Wellesley and the determination of an army.

Most of the news, though, lay in a new clinical trial for a drug called pyrimethamine that would push the deficient enzyme back into the body. What impressed me, though, was after it had been pulled by a pharmaceutical company (after it had realized there was no financial gain to be had), parents rewrote the trial’s protocol and raised funds to revive it. Incredible.

But here’s the cool part: the day after my articles were published in the special genetics issue, the Tay-Sachs Gene Therapy Consortium received a huge $3.5 million grant from the National Institutes of Health! (The articles/grant were in no way connected, obviously. The timing was purely coincidental, but neat). Anyway, I am so excited about the future of this research—scientists in different labs, in different countries, are working on different components of viral vector gene therapy. This may be the beginning of a new chapter for Tay-Sachs, one in which the diagnosis is not a death sentence.

Today was exciting because…

today the Online News Association announced that the the Forward and the St. Louis Beacon are finalists for Online Journalism Awards!!! This is exciting because I’ve worked at these two places. But even more exciting: I was with my boss at the Forward on my last day there when he heard the news. And less than a minute later, my phone buzzed with an e-mail from my boss from last summer at the Beacon, breaking the news of the nomination. Although I am unqualified to judge—and I am obviously biased—based on what I know, these two publications deserve the recognition and much more.

The Forward! A national Jewish weekly newspaper.

The St. Louis Beacon! An online startup following the sale of the Post-Dispatch

In other news: spent the morning working on Spec’s orientation issue, wrote a blog post for Spec, bumped into several administrators, and finished up work at the Forward. I’m going to miss the people there, and I already miss my job at the Daily News. School is coming soooooon… senior year. Oh boy.

It’s Saturday night

and I’m working on an article (for the Forward.) It’s the only time I have to polish things up before deadline. But I don’t resent it, because I think this one is going to be pretty meaningful. We shall see. I just don’t feel like I’m in the zone for a hardcore editing session yet. Hopefully five minutes of distractions will cure that… and maybe I’ll even finish with enough time to get some sleep for work tomorrow.

Meanwhile, I just read about the AP’s court confirmation strategy. Pretty smart for a company usually characterized as old media. Their Twitter, AP_Courtside, is already soliciting questions from readers.

Also, I’ve had unusually vivid dreams lately. One of them was a bizarre reflection on sleepaway camp. In another, for some reason, the News office was housed in the St. Louis Beacon building (weird because one is based in NY and the other in the middle of the country.. Also weird because the Beacon doesn’t have its own building), and some supernatural disaster caused a glass ceiling to cave in on top of us. All sorts of things rained down on the building, including these brown, dirty, rectangles. Since the News didn’t have me on anything at the moment, I offered to help the Beacon’s coverage of the tragedy. So I took to the apocalyptic streets, notebook in hand, to end up … in Harlem. Which is decidedly not in Missouri. Sheesh.

Stendhal’s book is a brilliant picaresque. He’s great at capturing social subtleties. I find myself savoring over details, and reading so so so slowly. At this rate, I won’t finish until the end of the summer.