An Open Invitation to CMT and Disability Voices on Bluesky: Please Bridge to the Fediverse

This blog now speaks the language of the fediverse. Every post here goes out over ActivityPub, the open standard behind Mastodon and thousands of independent servers, from @news. Anyone on those networks can follow it, reply to it and share it, without an account at a big platform and without anyone’s algorithm in the middle.

When I went looking for people to follow back, I hit a wall. The researchers, clinicians, journalists and advocates whose work matters most to people with CMT and other neuromuscular diseases are mostly on Bluesky. And unless they choose to connect it, a Bluesky account can’t be followed from the fediverse, or from this blog.

I checked. As of October 2026, I could not find a single CMT or neuromuscular researcher, clinician or patient organization that can be followed from the fediverse. Not one.

Why This Matters

People with rare diseases already struggle to find reliable information. What they do find online tends to come from whoever is loudest or best funded: patient charities with marketing budgets, supplement sellers, private clinics, and “warrior” success stories. Evidence-minded voices are the counterweight, and they can only be a counterweight where people can actually hear them.

The fediverse is where a lot of disabled people, scientists, librarians and public-interest technologists moved when the old platforms turned hostile. It’s also where independent blogs like this one, and a growing number of news sites and universities, now publish directly. It is small, but it isn’t owned by anyone, and nobody can sell it or switch off your audience. For people whose health information has been shaped for years by platform algorithms and advertisers, that is worth a lot.

The Fix Takes One Click

Bluesky runs on its own protocol. A free, open-source bridge called Bridgy Fed connects it to the fediverse, but only for people who opt in. To opt in, a Bluesky user follows the account @ap.brid.gy. That’s it. Your posts then become followable from Mastodon and the rest of the fediverse at an address like @yourhandle@bsky.brid.gy, and replies from the fediverse come back to you on Bluesky. You can opt out again later. The bridge’s own documentation explains the details at fed.brid.gy.

Who I’m Asking

These are the people and organizations I’d follow first. Their descriptions are taken from their own Bluesky profiles.

Neuromuscular Research and Care

• Prof. Gita Ramdharry, physiotherapist and professor of physiotherapy, whose research is in neuromuscular diseases. Physiotherapy is one of the few things that demonstrably helps people with CMT, and her voice should reach them.
• Prof. Melissa Bowerman, professor of neuromuscular and skeletal disorders at Keele University, who researches the pathology of rare neuromuscular diseases and new treatments for them.
• Peter AF, a clinician scientist and consultant neurologist interested in neuromuscular diseases, neuropathy and nerve regeneration.
• The Neuromuscular Disease Network for Canada (NMD4C), which connects clinicians, scientists, patients and industry across the country. A Canadian network belongs where Canadians who have left the big platforms can find it.

Science, Health and Misinformation

• Timothy Caulfield, professor of health law and science policy at the University of Alberta, and one of the clearest voices in Canada against health misinformation.
• Jonathan Jarry, science communicator with McGill University’s Office for Science and Society, “separating sense from nonsense.”
• André Picard, health columnist at The Globe and Mail.
• Pain BC, whose free pain self-management resources are listed on this blog’s Canadian resources page. I’m glad you started a Bluesky account, but please use it now, and connect it to the Fediverse.

Disability Journalism and Advocacy

• Julia Métraux, disability reporter at Mother Jones.
• Andrew Pulrang, who writes on disability, politics and popular culture.
• Gabrielle Peters, Vancouver writer and outgoing co-chair of the Vancouver City Planning Commission.
• Imani Barbarin, disability rights writer, known online as Crutches and Spice.

If You’re Reading This From the Fediverse

Some of the people above may never see this post, so a nudge helps. If you follow any of them on Bluesky too, let them know you’d like to follow them from where you are. And if you know CMT or neuromuscular researchers, clinicians or patient groups who are already followable from the fediverse, tell me. I’d love to be proven wrong.

Updated October 14, 2026: the blog now federates as one account, @news, instead of from my author account, @danknauss.