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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
New ALS Treatment? — Hold Your Applause, Please
If you like this blog, send it to 3 friends. Let’s keep the conversation going. ALS is in the news again. This time there’s a lot of hoopla about a trial involving stem cells. Before we all get too excited, … Continue reading
Thoughts on Leadership – Listen Up, Nancy Brinker
If you like this blog, send it to your friends. Let’s keep the conversation going. My topic this week is not directly related to health. But it concerns a subject very important to all of us who care about health: … Continue reading
Posted in ALS, Breast Cancer
Tagged Joanna Newcomb, Katherine McGhee, Komen, Nancy Macgregor, Race for teh Cure, Susan G.Komen for the Cure
5 Comments
Choices: How I Live with ALS
If you like this post, pass it on to your friends. Let’s keep the conversation going. At every turn in our lives, we’re faced with choices. When I was diagnosed with ALS in November, 2010, little did I know about … Continue reading
Posted in ALS, Disability, Illness
Tagged Amy Roman, Michelle Mendoza, neck brace, PEG tube, text-to-speech, text-to-voice, wheelchair
16 Comments
Further Thoughts on Disability Access
If you like this blog, pass it on to your friends. Let’s keep the conversation going. In September of last year I wrote a blog on disability access, based on my experiences then traveling in an increasingly disabled condition. Five … Continue reading
Posted in ALS, Disability, Health Policy
Tagged First Run Features, Inc, Mirror Lake, pink ribbons, Smith College, Yosemite, Yosemite Falls, Yosemite Lodge
2 Comments
You Don’t Have to Talk Like Stephen Hawking
If you like this blog, forward it to your friends. Let’s keep the conversation going. Stephen Hawking is famous. He should be. He’s a very influential theoretical astrophysicist. And he’s achieved that fame and influence despite being diagnosed many years … Continue reading
Posted in ALS, Medical Science
Tagged Apple, Intel, iPad, Stephen Hawking, text-to-voice, Tim Cook
8 Comments
Nothing Should Have to Be This Hard
I’m in touch with a lot of people about health issues. I continue to be amazed by the range of needs that people have, and how hard it is to meet them. But some of the issues that come to … Continue reading
Posted in ALS, Breast Cancer, Illness
Tagged als, breast cancer, Greenwich CT, Komen, Nancy Brinker, Roger Petrone, sick time
17 Comments
Mi’She’Berach: Thoughts on Illness and Blessing
This is a long essay prompted by my thoughts about the Jewish New Year, the Jewish Day of Atonement, and the prayer that Jews say for healing. Grab a cup of your favorite hot beverage, and settle in. As always, … Continue reading
Posted in ALS, Illness
Tagged Debbie Friedman, Etz Hayim, Hamlet, Jewish Healing Center, Judaism, mikvah, Neo Kate, NeoSpeecj, Shulcan Aruch, Torah
30 Comments
Pink Ribbons and Lou Gehrig: Time to Bury Useless Symbols
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! People who have known me a while know that I’m no fan of pink ribbons … Continue reading