CMT Blog

Sunlight on the CMTA

How the CMTA Mishandles Moderation and Its Facebook Community

Dan Knauss

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Line drawing of an online group's comment feed in a rounded window, with a dotted empty slot where one member's comment used to be; that comment, outlined in red, has been tossed out of the window to the right, while a gavel strikes a block on the left.

I know Kenny Raymond, and our history isn’t neutral, in the sense I had an unpleasant online run-in with him six years ago, in 2020. I’ve held off on telling this story because I had better things to do. It was a petty and shameful little drama, better forgotten, and for the most part I did. But as the years have passed, I now see a larger untold story about consistently questionable patterns of behaviour from Raymond and his employer, the US-based CMTA. Both stories have relevance to all of the CMT community.

How It Started

In March 2020 I invited Raymond to contribute to this blog, and he published a few posts here. Things soured after I corrected minor typos in his posts. Pretty minor stuff, but he blew his stack over it. He deleted all his work here and abandoned the project. That was fine with me, but Raymond didn’t leave me alone. Later that year, after I posted on my personal Facebook page that political leaders who had downplayed COVID-19 would be getting what they deserved if they died of it, he criticized me publicly, defended Donald Trump, and Boris Johnson, and he kept commenting ragefully on my page, so I blocked him. Unfortunately I had made the mistake of befriending him on Facebook earlier.

Removed Without a Hearing

By October 2020 Raymond was a moderator of the CMTA’s Facebook group, which suddenly decided to enforce a rule forbidding members to block any moderator. I objected in writing and explained that I had blocked one moderator over his conduct outside the group, and it was inappropriate to compel me to expose my personal page to anyone I considered hostile and certainly not a friend.

An unsigned reply from the CMTA’s info address said the rule stood and that I had already been removed from the group. When I asked the Director of Community Outreach about the appeal process, and pointed out that the moderator I’d blocked sat on the CMTA’s Advisory Board, she replied that leadership was consulting legal counsel and would follow up. As far as I can find, no one did. I left Facebook not long after — it was the COVID global pandemic period when social media went from being generally toxic to frequently insane. My teenage daughters and university students were dealing with it, and my recommendation still stands: leave it!

Unsubscribe Means Nothing

Unfortunately, I have never been able to stop getting unsolicited mail and email from the CMTA, despite multiple requests and unsubscribe attempts.

We will remove you entirely from our database.

CMTA staff email, December 6, 2024

The record is in my inbox. In early December 2024 I used the CMTA’s unsubscribe link and got an automated confirmation that I was unsubscribed “from all email communications.” I asked for every record about me to be deleted, and on December 6, 2024, a CMTA staff member wrote back: “We will remove you entirely from our database.” Five months later, a new branch leader in Tennessee, a state I have never lived in, emailed me an invitation to her branch meeting, and the CMTA’s outreach staff promised once again to remove me from the list. Since February 2026 the CMTA has sent 17 more emails to another of my addresses, each with a footer saying I’m getting it “because you signed up for CMTA updates,” plus four from its Western Canada branch.

Update, October 14, 2026: On October 12 I sent the CMTA a written request to withdraw my consent to its messages and delete all my personal information. Two days later Laurel Richardson, its Senior Director of Community Outreach, replied that both of my email addresses had been deleted from all CMTA databases, that the CMTA had not archived any of my information, and that it had asked the leaders of its Western Canada, Central Tennessee and Central Virginia branches to remove me from their lists. She said my December 2024 request had named only one of my addresses. She also explained that branch leaders start from a list pulled from the CMTA’s database and must remove names from their own lists by hand, so the CMTA hadn’t known to ask the Central Tennessee leader, and that it doesn’t know how I was added to that branch’s list. The reply didn’t say whether my addresses will be kept on a do-not-contact list so they aren’t added again. I’ll note it here if any more CMTA email arrives.

What the Law Says

Canada’s Anti-Spam Law

Canada’s Anti-Spam Legislation (CASL) covers commercial electronic messages sent to people in Canada, no matter where the sender is. Senders need consent, must identify themselves, and must honour an unsubscribe request within 10 business days. Penalties run up to $10 million per violation for an organization.1

Charities get one exemption: messages sent by a registered Canadian charity whose primary purpose is raising funds for it. Even then, the CRTC says messages promoting a corporate sponsor’s commercial activity can still fall under the law.2 As far as I can tell, the CMTA is a US 501(c)(3), not a charity registered with the Canada Revenue Agency. It also promotes sponsors’ discount codes and an Amazon store that pays it a commission. Whether any particular CMTA email counts as a commercial message is for the regulator to decide, but an unsubscribe is supposed to mean unsubscribed.

Canadian Privacy Law

Canada’s federal privacy law, PIPEDA, applies to organizations that handle personal information in the course of commercial activity. Non-profits aren’t automatically exempt, and the law specifically names “the selling, bartering or leasing of donor, membership or other fundraising lists” as commercial activity.3 I have no evidence that the CMTA sells its lists. Its privacy policy says it doesn’t, and it offers “deletion of your personal data” on request.4 That’s the point: it promised me deletion in writing, and my details kept turning up on its lists anyway.

US Law

In the US, the CAN-SPAM Act also requires opt-outs to be honoured within 10 business days, but it targets commercial advertising, it is enforced by the Federal Trade Commission, and it gives individuals no right to sue.5 The CMTA is based in Pennsylvania, where the Department of State regulates charities and takes complaints about them.6

None of this takes a lawyer to fix. Every email platform has a suppression list. A charity that asks people with a progressive disease for their trust, and their money, should be able to keep a written promise to stop writing to one of them.

What Matters Most

This is the petty part of my past history with the CMTA and other neuromuscular disease advocacy groups in their online arenas. Raymond’s fragility and anxious reactiveness to the slightest criticism — or perhaps just someone else with a CMT blog — was backed up and amplified by the CMTA itself. And as time has passed, I’ve tracked a wilful disregard on their part, often in undisclosed collusion with Raymond, to misrepresent his expertise and credentials, as well as his work. Raymond’s self-publications cut against much prevailing medical opinion today about the diminishing usefulness of the CMT brand in a clinical and diagnostic context where genetics now hold the answers and identify the causal factors in a disease’s expression.

Here is the rest of that larger story: The Sloth’s Taxonomy: A Review of “Experts in CMT.”

Notes

  1. CRTC, “Frequently Asked Questions.” ↩︎
  2. CRTC, “Frequently Asked Questions,” on registered charities and newsletters that promote corporate sponsors. ↩︎
  3. Office of the Privacy Commissioner of Canada, “Commercial Activity.” ↩︎
  4. CMTA, “Privacy Policy.” ↩︎
  5. Federal Trade Commission, “CAN-SPAM Act.” ↩︎
  6. Pennsylvania Department of State, “File a Complaint.” ↩︎

Sources

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