-
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 Treatment
Drug Development and Access: Time to Act Like Lives Depend on It
If you like this blog, send it to 3 (or more) of your friends and encourage them to sign up. Let’s keep the conversation going! The Problem and the Incremental Solution An Op-Ed in the Sunday New York Times in … Continue reading
Posted in ALS Treatment, Health Policy
Tagged capitalism, drug cost, drug development, oncology, pharmaceutical industry, Rilutek
7 Comments
Having a Voice, Communicating, and Somewhere In Between
If you like this blog, send it to 3 (or more) of your friends and encourage them to sign up. Let’s keep the conversation going! I need to start this post with a disclaimer that may surprise you: I am … Continue reading
Posted in ALS Treatment, Illness
Tagged banter, Christopher Hitchens, conversation, iPad, Neo Kate
18 Comments
The Obligation of Privilege
If you like this blog, send it to 3 (or more) of your friends and encourage them to sign up. Let’s keep the conversation going! I am a person of privilege. I am well-educated, I know how to get the … Continue reading
Posted in ALS Treatment, Illness
Tagged Breast Cancer Action, Bristol-Meyers-Squibb, construction, elevator, Jerri Nielsen, Lance Armstrong, pay it forward, permits, Repubicans, UCSF, variance
14 Comments
There’s that person with . . .
If you like this blog, send it to 3 (or more) of your friends and encourage them to sign up. Let’s keep the conversation going! I’m “meeting” some wonderful people as I deal with ALS, including folks who have other … Continue reading
Posted in ALS Treatment, Breast Cancer, Illness
Tagged Cancer Sucks, disability, iPad, JayBee, KQED, Neo Kate, Parkinson's Disease, pink ribbons, Speak It, turbans
12 Comments
Helping Each Other — It’s Not So Hard
If you like this blog, send it to 3 (or more) of your friends and encourage them to sign up. Let’s get the conversation going! From Ashland, Oregon, April 3, 2011 On the road I’m in Ashland, Oregon as I … Continue reading
Posted in ALS Treatment, Illness
Tagged Aker, Forbes Norris Center, helping each other, Langer, Luminaud, NABCO, Parkinson's Disease, speech impairment, voice amplifier
11 Comments
Isn’t it time to change the message?
If you like this blog, send it to 3 (or more) of your friends and encourage them to sign up. Let’s get the conversation going! Those of you reading this blog are already living in the “information age.” Seems to … Continue reading
Posted in ALS Treatment, Breast Cancer, Medical Science
51 Comments
Don’t Make Promises You Can’t Keep – Especially in Health
You’ve heard or seen them: the ads or promotions for organizations promising that, if you’ll just support them, they will cure or eradicate any disease you care about. In ALS, it’s the ALS Association promising to “create a world without … Continue reading
Posted in ALS Treatment, Breast Cancer, Medical Science
14 Comments
Patient? Who’s patient?
Those of you know me know that I care deeply about words and what they convey. Years ago, not long after I became the Executive Director of Breast Cancer Action – www.bcaction.org – I had occasion to look at the … Continue reading
Posted in ALS Treatment, Illness
26 Comments