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Sunlight on the CMTA

Barbies and Warriors: How the CMTA Sells CMT

Dan Knauss

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Line drawing of a spotlight shining down on a star above an empty podium, while a cane, an ankle-foot orthosis, a walker and a wheelchair stand in the unlit space on either side.

The US-based Charcot-Marie-Tooth Association sells CMT with “CMT Barbie” and “CMT warrior” stories, a CBD sponsor, an Amazon store that pays it a commission, and a blog post that enthuses about an unproven private oxygen therapy that can cost thousands. This is what the charity’s own newsletters, emails, podcast, blog, and sponsor pages show Canadian and American audiences, and what they leave out.

Life is especially complicated when your disease and disability can be hidden. Young men and women with CMT are encouraged to compensate with athleticism that can be injurious. Young women with CMT may be encouraged to hide affected limbs and compete in beauty pageants. Young men take up bodybuilding and racing as swimmers and runners. I’ve heard many personal stories like this.

Sadly, organizations like the American CMTA market themselves with images and stories of “CMT Barbies” and “CMT Warriors.” After decades of outstanding work supporting medical research from the 1980s to the 2000s, the CMTA began pimping disease and disability in the Ugly American style.

The Receipts

Don’t take my word for it. Here is the US-based CMTA in its own words. The 2023 material has persisted since then, with the same people, pages, and sponsors cropping up again every year, even in Canada.

2023: Barbies and Warriors

  • “CMT Barbie.” The CMTA’s May 2023 CMT Spotlight newsletter ran a feature headlined “From TV Celebrity to CMTA Star.” It introduced the leader of its Edmonton branch as “known as CMT Barbie for modeling with Kello Inclusive” and invited readers to “learn about how Victoria triumphs over CMT.”1 The nickname is repeated in the show notes for that episode of the CMTA’s own CMT 4 Me podcast, which are still online.2
  • “CMT warriors.” In an October 10, 2023, email promoting her as keynote speaker at its Patient & Research Summit, the CMTA said she “connected with fellow CMT warriors” and that her “inspiring story of resilience and determination serves as a beacon of hope.” Weeks earlier, CMTA branch emails to members in Alberta opened with “Hello Fellow CMT Warriors.” The Edmonton branch has since become the Western Canada CMTA Branch, and its 2026 notices are still signed by her as branch leader.

Victoria, known as CMT Barbie for modeling with Kello Inclusive … Learn about how Victoria triumphs over CMT.

CMTA, The CMT Spotlight, May 2023

Still Running: Warriors, Nerve, CBD, and a Cut

  • Fighting, winning, and miracle treatments. The CMTA’s Simply CMT blog publishes “Fighting Forward: My Life with CMT,” whose author is billed as a “CMT warrior who refuses to let a hereditary neurological condition define her limits.” The story is told in the language of sport and victory, and its biggest enthusiasm is hyperbaric oxygen therapy, which the author says leaves her “faster, stronger, and more capable” the day after each session.3
  • “It takes nerve.” For CMT Awareness Month in September 2026, the warrior became a hero of nerve. The CMTA’s #ItTakesNerve campaign told members “It takes nerve. So does living with CMT,” sent emails urging them to read the stories, “Get inspired,” and add their own, and closed the month with a fundraising appeal headed “Nerve got Joseph here. Yours can take him further.”4
  • A “CMT warrior” selling CBD. The CMTA’s corporate partners page lists Organileaf Farms, a CBD company “pioneered by a fellow CMT warrior” that offers “day to day balance and relief” and donates “a significant portion” of each sale back. Its testimonial says the CBD “helps me sleep soundly.” Beside it, CosySoles, a Canadian maker of grain-filled heated slippers, says its products “help promote circulation,” with a discount code for CMTA members.5
  • A gadget store with a cut. In November 2024 the CMTA opened an Amazon storefront of “assistive tools and products” that earns it a commission on most purchases, while noting that it does not “guarantee product quality.”6

None of this is a knock on the people in these stories. They have every right to tell them however they like. The problem is a charity choosing them as its face, and selling the idea that the right attitude and a good photo shoot can beat a progressive neurological disease.

Who Gets Left Out

This is really the last thing people with neuromuscular diseases need to be concerned with — body image and how they compare to others — when they are dealing with disability, mobility loss, and aging. If you attend a typical gathering of CMT-diagnosed people, the average age will tend toward the 60s. That is when the symptoms, diagnoses and support needs tick up significantly. A person who is mature in age and character doesn’t need any “CMT Barbie” or “Warrior” nonsense. They probably laugh it off and move on, but it’s got to sting. There is more and more ageist messaging like this in our world today.

It’s great there are standout athletic performers and celebrities in every disadvantaged group — people who are famous for being famous, as the old joke goes. It’s not great to idealize them and encourage everyone else in the disadvantaged group to restrict the scope of their own ambitions to those narrow, often inappropriate and unobtainable outcomes.

Younger people are more prone to being hurt, misled and let down. Older people know better, often because they learned things the hard way, from their own mistakes and by being let down by others. Both are poorly served by advocates who cater to denial of the reality of the disease and the delusion that it’s a dragon we can kill or overcome with cosmetics.

The Hyperbaric Hard Sell

Sometimes it isn’t cosmetics but a pressurized chamber. Hyperbaric oxygen therapy (HBOT) means breathing pure oxygen inside one. It’s a real treatment for a short list of conditions: decompression sickness, carbon monoxide poisoning, gas gangrene, radiation injuries, some burns, and stubborn diabetic wounds. Health Canada has licensed hyperbaric chambers only for those recognized uses. It warns that some private clinics claim to treat MS, cerebral palsy, stroke, and more, when there is “no scientific proof that this therapy is useful” for them.7

CMT isn’t on any of those lists. Neither is peripheral neuropathy. The small body of research on hyperbaric oxygen and nerves is mostly about diabetic neuropathy and neuropathic pain, which have different causes from a hereditary neuropathy. I can’t find a single controlled trial of HBOT in people with CMT.

That’s why no public health plan in Canada will pay for it. In Alberta, the two hospital programs, at the Misericordia in Edmonton and the Foothills Medical Centre and Arthur J.E. Child cancer centre in Calgary, treat only “a specified list of conditions” approved by Alberta Health and the College of Physicians and Surgeons.8 The Ottawa Hospital’s hyperbaric unit, which works from Ontario’s list of fourteen OHIP-funded indications, says plainly that it does not treat “off-label or self-pay conditions.”9

So a CMTer who wants HBOT has to buy it from a private clinic. A course usually runs 20 to 40 sessions of 90 minutes or more, at about $150 to $400 each. That works out to somewhere between $3,000 and $16,000, by one industry estimate.10 Since the author of the CMTA story says the benefits fade and she has to keep going back to “reclaim them,” that’s not a course, it’s a subscription.11 Canadian hyperbaric doctors have been warning about this market for years. In 2010, the medical director of B.C.’s only public hyperbaric clinic said off-label use in private clinics could harm patients and damage the specialty’s credibility.12

The benefits fade and she has to keep going back to “reclaim them.” That’s not a course, it’s a subscription.

Money isn’t the only cost. Health Canada lists pressure injuries to the ears, sinuses, and lungs, vision changes, rare oxygen seizures, and the fire risk of an oxygen-rich chamber. It also names the cost that matters most for a slow, progressive disease: people may “delay, or in some cases not receive, proven treatments.”13 For CMT, the proven treatments are unglamorous: physiotherapy and exercise you can sustain, braces and orthotics, good footwear, and foot care, sometimes surgery, and steering clear of neurotoxic drugs. None of them makes a good testimonial.

To be fair, the author writes that “None of this is a cure for CMT,” and the CMTA’s page carries a boilerplate footer saying it “does not endorse any specific products or treatments.”14 But a footer isn’t a warning. Nowhere on the page will a reader learn that HBOT has no trial evidence behind it for CMT, that no public plan covers it, what it costs, or what can go wrong. A patient charity publishing that, under a “warrior” banner, is lending its name to a private-pay wellness pitch. That is what this kind of marketing does: it takes what one person could afford to try and holds it up as an example for everyone else, while the bills and the risks stay with the reader.

CBD, Slippers, and a Commission

CBD gets the same soft sell. In January 2026, a Cochrane review of 21 trials with more than 2,100 adults found no high-quality evidence that cannabis-based medicines relieve nerve pain better than a placebo. The small effects seen were too small to matter clinically, and products containing THC brought dizziness and drowsiness.15 The only CMT-specific study I can find is a survey of people already using medical cannabis, which tells us what CMTers are trying, not whether it works.16 A sponsor’s testimonial on a charity’s website tells us even less. Warm slippers feel good on cold CMT feet, and that is about all anyone can honestly say about them.

A charity putting its name beside health claims it would never accept in a grant application, and taking a cut.

None of these products is a scandal on its own. The problem is a charity that bills itself as the largest private funder dedicated solely to CMT17 putting its name beside health claims it would never accept in a grant application, and taking a cut.

The Cost Nobody Counts

The CMTA and other disability communities have intensely online components thanks to the rise of Facebook and the COVID-19 pandemic. The internet can be a tool for communication and connection, but the toxic effects of social media and platforms like Facebook are well documented now, especially for young, disabled, and other potentially vulnerable people.18

Depression commonly accompanies CMT and any disease or disability without healthy supports. It also clusters with young people and high social media use. Where there is more depression there are also more deaths of despair from addiction, overdose and suicide. From the people I’ve met and corresponded with about CMT, I know they and their families have often suffered in these ways, and we all know the risks are real.

These are some of the realities of our bodies and lives that charities and fundraisers for CMT and neuromuscular disease research do not want to face. Philanthropy can be great, but it can also reflect the blindness of the affluent and their comfortable lives. In the CMT advocacy community it’s common to de-emphasize the primary importance of what any CMTer can do to help themselves, and what they can do together, to cope with their disease and disability now. Pragmatic needs are eclipsed by the drive to sell the distant and likely chimerical dream of a magical, silver-bullet cure.

More to Come

As time passed and I learned more, several things alarmed me about non-profits like the CMTA. They claim to speak for a diverse community with their Barbie and Warrior poster children while competing with other organizations for attention and funding. In their rush to secure attention and funding, superficial images and empty promises have become more important than substance in support and science. After years of letting it go and tuning out, I see nothing has improved, and maybe nothing will until pointed criticism is aired and the facts stick. In the past, I promised the small amount of time I had to give to this blog would start to include more exposés of activity that’s a disservice to CMTers all over the world.

It’s coming. It has already started with The Sloth’s Taxonomy, on the CMTA’s head of communications and his “Experts in CMT” catalogue, and Three “Treatable CMT” Stories, on cures the charities announced and never followed up.

If you’re in crisis or thinking about suicide, call or text 9-8-8 (Canada’s Suicide Crisis Helpline), any time.

Notes

  1. Charcot-Marie-Tooth Association, “From TV Celebrity to CMTA Star.” ↩︎
  2. Ouellette and Ouellette, “Victoria Berezovich.” ↩︎
  3. Pearlman, “Fighting Forward.” ↩︎
  4. Charcot-Marie-Tooth Association, “2026 CMT Awareness Month.” ↩︎
  5. Charcot-Marie-Tooth Association, “Corporate Partners.” ↩︎
  6. Charcot-Marie-Tooth Association, “CMTA Gadget Store.” ↩︎
  7. Health Canada, “Hyperbaric Oxygen Therapy.” ↩︎
  8. Alberta Health Services, “Hyperbaric Oxygen Therapy Clinic.” ↩︎
  9. The Ottawa Hospital, “Hyperbaric Medicine Unit.” ↩︎
  10. Canada Hyperbarics, “Hyperbaric Oxygen Therapy Cost.” ↩︎
  11. Pearlman, “Fighting Forward.” ↩︎
  12. “MDs Want Rules.” ↩︎
  13. Health Canada, “Hyperbaric Oxygen Therapy.” ↩︎
  14. Pearlman, “Fighting Forward.” ↩︎
  15. Parkinson, “No Clear Evidence.” ↩︎
  16. Canals et al., “Patient Reported Outcomes.” ↩︎
  17. Charcot-Marie-Tooth Association, “Donate.” ↩︎
  18. Stangl et al., “Negative Psychological and Physiological Effects.” ↩︎

Sources

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