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Recent Posts
- In memory of Blandina Khondowe
- Barbara Brenner Breast Cancer Activist Scholarship
- Remembering Barbara
- Funeral arrangements and after
- Barbara Brenner 1951-2013
- Thanks and Blessings
- The Legislature and Breast Cancer: Not a Good Match
- Telling the FDA What I Think About ALS Drug Trials
- Has NBCC Lost Its Way?
- Steve Gleason: A Rare Celebrity Doing Good by Talking About His Illness
- Approaching Gun Violence as a Public Health Problem: Who Gets to Have a Say?
- Adventures with a Feeding Tube Replacement: A Not So Funny Story, a Cautionary Tale, and A Call To Action
- What I Learned as A Volunteer
- One More Time With Feeling: Can We Be Done With Mammography Screening?
- Sitting Down to Call Out Stand Up To Cancer (SU2C)
- NBCC — The Promise, the Process and the Problems
- Who Shall Live and Who Shall Die? — A Yom Kippur Reflection
- Not So Funny Things Happened on the Way to a Diaphragm Pacer: When “Informed” is Not “Consent” and Related Adventures of an ALS Activist
- FDA to ALS Patients: Fuck You
- Fool Me Once, Shame on You. Fool Me Twice . . . : Nothing New at Komen
- Broadening ALS Research to Help Patients III: Make Biogen Idec Walk Its Talk
- Broadening ALS Research to Help Patients — II
- Let’s Broaden ALS Research to Help Patients
- The Supreme Court on Health Care II — The Medicaid Debacle
- Wonders Never Cease — The Supreme Court’s Health Care Decision
- Previews in Health Redux
- If you want to sign a letter calling on Nancy Brinker to resign
- Susan Love: Time to Think Before You Pink
- Tobacco Company Lies Don’t Mean You Should Vote for Prop. 29
- Odds and Ends in the Pink Ribbons Wars
- What Ever Happened to Previews of Coming Attractions in Health?
- Changing the Culture of Health Care in a Consumer Society — Not So Easy
- New ALS Treatment? — Hold Your Applause, Please
- Thoughts on Leadership – Listen Up, Nancy Brinker
- Choices: How I Live with ALS
- Don’t Be Surprised By the Undelivered Promise of Personalized Medicine
- Context is Everything — Framing the Film Pink Ribbons, Inc.
- Further Thoughts on Disability Access
- Komen’s True Colors: Red, not Pink
- Komen Politics: It’s Not Just About Abortion
- Gloves Off: What the Fuck, Komen?
- Pink Ribbons, Inc. is Coming to the US
- You Don’t Have to Talk Like Stephen Hawking
- Tikkun Olam and Corporate Responsibility
- IOM Report on Breast Cancer and The Environment: What Komen’s $1 million Bought
- Social Justice: The Health Connection
- Can We Watch Our Language, Please?
- Nothing Should Have to Be This Hard
- Is October Over Yet?
- Mi’She’Berach: Thoughts on Illness and Blessing
Ways to Look at Illness
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
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 als, Betttty Rollin, Betty Ford, Steve Gleason, Team Gleason
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
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 Biogen Idec, Catherine Chew, CDER, Dexpramipexole, FDA
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 Biogen, Biogen Idec, dex, Dexpramipexole, FDA, FDA Commissioner
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
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 Biogen, Biogen Idec, clinical trials, dex, Dexpramipexole, diaphragm pacer, Scangos
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 als, ALS Association, ALS Society of Canada, Facebook, Forbes Norris Center, motor neuron disease
3 Comments