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Connections: Help Save A Life

Posted in New Media and Tech, and Politics and Public Affairs

I met RocketBoom founder Andrew Baron in the press room at Portable Media Expo in 2006. He recorded one of those “This is Andrew, and you’re listening to…” IDs for a podcast I was producing. Later, as managing editor of Blogger & Podcaster, I interviewed Andrew for a feature I was planning. The article was killed by higher powers, unfortunately. What I didn’t know when our paths crossed, was that I had a much older connection to Andrew. In 1991, when I worked for the Texas Attorney General’s Office, I met a wonderful woman named Joan Baron. Joan is Andrew’s aunt, sister of his father, Dallas attorney Fred Baron. Joan, like me, was “passing through” state government, which made for a simultaneously detached and earnest approach to the place and to the work. We talked politics. A lot! We snarked about the byzantine and petty ways of state agency project planning, and the foibles of people who worked the bureaucracy in cynical ways. Joan talked a lot about her brother Fred, a high-powered lawyer who had made his reputation (and a lot of money) going after companies who had exposed workers to asbestos. Fred was a big-time Democratic party fundraiser, and flew folks like Texas Governor Ann Richards around in his plane. I got the sense that Fred was a larger than life figure in their family.

Joan and I remained friends when I moved to California. Homesick as I was, I returned to Austin often, and spent many evenings drinking beer with Joan and her then-husband, Doug, and ranting about politics and over-crowding in California. Those were good times, and kept me sane during a tough patch in my own life.

I made the connection between the Texas Barons and the new media Baron in the most devastating way possible. The tech media world, and my Twitter stream, is buzzing today with the news that Fred Baron has final stage multiple myeloma, and that his son Andrew is working to convince drug maker Biogen to allow Fred to be treated with Tysabri, a drug that is not approved for Fred’s illness, but that has been shown to have promise in experiments.

From Andrew’s post:

In what can only be defined as a miracle in timing, a few days ago, one of his doctors who has been studying his tumor cells in the lab for years found an antibody with an exact match: Tysabri which is manufactured by your company, Biogen Idec. In the test tube, it attached to the antigens on the surface of the tumor 100%.

Though the drug has never been used before in this way, and because time is running out, the head of the FDA, Dr. Andrew von Eschenbach has granted special approval for use of the drug for this purpose but you have personally decided “no”.

Andrew Baron asks his blog readers to contact Biogen CEO James Mullen or anyone else at the company they may know, to plead that the drug be approved for use by Fred Baron’s doctors. He is also seeking support from elected officials, as well as treatment alternatives.

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