Category Archives: ALS

Telling the FDA What I Think About ALS Drug Trials

As readers of this  blog know, I have taken issue with a number of things related to how ALS drug trials are run. Some people at the Food and Drug Administration (FDA) read my blog and the comments to them. … Continue reading

Posted in ALS, ALS Treatment, Health Policy | Tagged , , | 1 Comment

Steve Gleason: A Rare Celebrity Doing Good by Talking About His Illness

Steve Gleason: A Rare Celebrity Doing Good by Talking About His Illness People who know me know that I am no fan of either football or celebrity spokespeople for illnesses they have had. In that light, this blog is bound … Continue reading

Posted in ALS, Breast Cancer | Tagged , , , , | 14 Comments

Adventures with a Feeding Tube Replacement: A Not So Funny Story, a Cautionary Tale, and A Call To Action

I have had a feeding tube since January 2012 because, thanks to ALS, I can not swallow food or liquids.  I have been nourishing myself since I got the tube. The tube is called a PEG tube. I have a … Continue reading

Posted in ALS, Disability | Tagged , , , | 9 Comments

Not So Funny Things Happened on the Way to a Diaphragm Pacer: When “Informed” is Not “Consent” and Related Adventures of an ALS Activist

Regular readers of this blog have read a lot about my adventures trying to get Biogen Idec, the makers of dexipramipexole (dex), to let me get a diaphragm pacer without being dropped out of the dex trial in which I’ve … Continue reading

Posted in ALS, ALS Treatment, Health Policy | Tagged , , , , , , , , | 18 Comments

FDA to ALS Patients: Fuck You

If you like this blog, please pass it on to your friends. Let’s keep the conversation going. I will spare my readers the long saga of my fight with Biogen Idec about the dex trial and my plans to get … Continue reading

Posted in ALS, ALS Treatment, Health Policy | Tagged , , , , | 28 Comments

Broadening ALS Research to Help Patients III: Make Biogen Idec Walk Its Talk

Like many readers of this blog, I have been exchanging emails with Dr. George Scangos, CEO of Biogen Idec, the company running the clinical trial in which I am a participant. The trial is testing the efficacy of a drug … Continue reading

Posted in ALS, ALS Treatment, Health Policy, Medical Science | Tagged , , , , , | 4 Comments

Broadening ALS Research to Help Patients — II

Late last week I posted here a message I sent I had sent to the CEO of Biogen Idec, the company running the dex drug trial I’m in. I encouraged people to write to the CEO, Dr. George Scangos, about … Continue reading

Posted in ALS, ALS Treatment, Health Policy | Tagged , , | 4 Comments

Let’s Broaden ALS Research to Help Patients

If you like this blog, pass it on to your friends. Let’s keep the conversation going. ALS clinical trials are usually quite narrow. They test one device or drug only, and exclude people who are already participating in another trial. … Continue reading

Posted in ALS, ALS Treatment, Health Policy | Tagged , , , , , , | 4 Comments

Previews in Health Redux

If you like this blog, pass it on to your friends. Let’s keep the conversation going. Regular readers of this blog will have read my post a while ago called “Whatever Happened to Preview of Coming Attractions in Health.”  I … Continue reading

Posted in ALS, ALS Treatment, Illness | Tagged , , , , , | 3 Comments

What Ever Happened to Previews of Coming Attractions in Health?

If you like this blog, send it to your friends. Let’s keep the conversation going! Anybody who knows about ALS knows where those of us with the disease end up. But there are steps along the way that can be … Continue reading

Posted in ALS, Breast Cancer, Illness, Medical Science | Tagged , , , , , | 5 Comments