Culture and Resistance
Art, literature, and critique: writing about disease, disability, and the institutions around them.
-
·
Who Writes the Rules for CMT Drug Trials?
The first framework for CMT drug trials was written by patient charities, clinicians and drug companies, two of them companies the CMTA has money in. The published paper carries no public conflict-of-interest statement.
-
·
Canada’s CMT1A Research Partnership: Who Funds It, and Who Gets the Rights?
The NRC, CMTA and Shark Tooth Biotech are pursuing an experimental CMT1A delivery approach. Disclosed investments raise questions about research contributions, commercial rights and benefits for Canada. The partners’ responses and the unanswered questions are set out here.
-
·
An Open Invitation to CMT and Disability Voices on Bluesky: Please Bridge to the Fediverse
The people CMTers most need to hear from are on Bluesky but invisible to the fediverse. One follow fixes that. Here’s why it matters, and who I’m asking.
-
·
Alice Wong: Our Stories Belong to Us
Alice Wong, who had SMA, built the Disability Visibility Project and #CripTheVote so disabled people could tell their own stories. Why it matters for CMT.
-
·
Shark Tooth: The CMTA’s Stake in a Board Member’s Biotech
In 2025 the CMTA held a $248,763 stake in a for-profit CMT1A company founded and owned by one of its own directors, built from donations earmarked for it. The audit says that director recused himself. A policy for its grant advisers leaves other conflicts to the chief executive.
-
·
Who Is Behind the CMTA?
In 2025, half the money the CMTA granted for US research went to projects led by its own advisers, or to a company one of them helps run. A look at the charity’s staff, boards, tax returns, grants and conflict rules, from its own pages and IRS filings.
-
·
The Sloth’s Taxonomy: A Review of “Experts in CMT”
Experts in CMT stretches a contested CMT taxonomy wider, brands its uncredentialled author an expert, and cites his employer, the CMTA, without disclosing it as such.
-
·
Barbies and Warriors: How the CMTA Sells CMT
“CMT Barbie,” “CMT warriors,” a CBD sponsor, an Amazon store with a commission, and an unproven oxygen therapy that can cost thousands. A close look at how the US-based CMTA markets CMT, in its own words.
-
·
Three “Treatable CMT” Stories, and What the Market Taught Us
Three heavily publicized CMT treatments of 2019–2023 (govorestat, PXT3003 and Engensis) all ended without a CMT approval, and the way they ended says a lot about how drug development treats rare neuropathies.
-
·
How the CMTA Mishandles Moderation and Its Facebook Community
A CMTA Facebook moderator I’d blocked got me removed from the group, with no appeal. For years after promising in writing to delete my records, the CMTA kept emailing me. Here’s the story, what the CMTA said when I formally asked again in 2026, and what Canadian and US anti-spam and privacy laws say about…
-
·
The Hope Mission
Like many cities, every day in Edmonton offers a direct view into an ongoing public health crisis, where many layers of disability and need are on display.
-
·
Anxious Dogs and People: Using AI to Make It Awkward
Throwing curveballs at ChatGPT gets the most interesting results. You start to see the “artificial” part of AI that often reflects an uncomfortable problem or ugly contradiction in the ways humans think and use language — especially to classify others, which always indicates status and value.