I love and admire you. I hope you knew that. I think I told you, but now I'm not sure. I love your boundless energy, your keen sense of justice, your brilliant mind, your ability to translate difficult concepts into language we can all understand. I admire how much you care about other human beings, and advocate for the sick, the poor, the marginalized, those without a voice. I relish reading anything you write. I will continue to read and re-read your book and articles and e-mails. I so wish there would be more.
Link to Macleans articles
Link to "The Meaning of Wife"
I simply can't imagine the world without your clarion voice, your wit, your tenacity. I can't imagine how your closest friends and family will cope with the loss of your presence in their lives. How they will deal with your much too soon, unbearable passing. I just heard from your friend, in a grief stricken voice mail (oh, I've had to make those phone calls when my brother died, and it's simply unbearable.) I do remember meeting him in Rochester with you, when you came from Toronto to see us and talk to us about Jeff's CCSVI treatment. It was such a joyous time for us all--it felt like rebirth. Springtime budding in Rochester, music, good food, laughter, hope.
And there have been the conferences together, e-mails, and phone calls. Difficult times full of controversy and medicalese and renewed and then dashed hopes. The last two years, I was so frustrated, and I know you knew that. I lashed out at you, angry that you were simply writing the truth. I felt betrayed, and we talked, and you forgave me. I'm so glad we made amends. Just as I'm glad that I did the same with my brother, before I lost him. You inspired me to keep writing, to not give up. But you also knew that, for my own sanity, I had to step back.
You dug in and included the history of the vascular connection to MS in your writing about CCSVI. Everything you wrote was always sourced with links to publications, quotes from doctors, a balanced approach to telling the story. link link link
Thank you for interviewing Dr. Michal Schwartz and for getting her research out into the larger public. link You knew it was her research that first inspired me to look at immune cells as protective for the brain, and we bonded over the fact that a brilliant woman had, no surprise, been dismissed by so many powerful men for questioning dogma. link
And over time, her theory is being proven, again and again. Someday, boosting specific immune cells and combining lifestyle and vascular intervention may well end neurodegenerative disease.
link to Professor Schwartz's research
You called us the "impatient patients"....which was simply a perfect description of the frustration that grew out of CCSVI clinical trials halted or mangled, and the influence of pharma. But many of us knew it wasn't over. link
Which is why it's hard for me to grasp your passing. There's still more to the story, many more truths for you to write. So much more. Dammit.
Thank you for everything. I learned so much from you, Anne.
Love to all those who loved you.
May we advocate for others, in your memory.
May we heed "the urgent call for compassion as the last-gasp remedy for systems on the brink—politics, health care, civil society, the planet itself." (written, as only you could say it, Anne.)