CMT Blog

Exposing the CMTA

Shark Tooth: The CMTA’s Stake in a Board Member’s Biotech

Dan Knauss

·

Line drawing of a violet shark fin rising from the waterline in the centre of a teal circle, with a dollar coin above and a dotted trail leading down toward the fin.

The people running the CMTA and deciding who gets their donors’ money are often the same people getting the money. The CMTA’s tax returns don’t explain how those conflicts are managed. Its audit explains one; nothing explains the rest.

Let’s jump right into the CMTA’s finances, since no one else appears to be looking at them on behalf of the neuromuscular disease community of researchers, patients, and their families. The clearest insider deal is on page one of Schedule L of the Charcot-Marie-Tooth Association’s 2025 tax return. Schedule L is where a charity must report business deals with its own insiders. The CMTA reported one: a $248,763 “equity investment in Shark Tooth Biotech,” which the return describes as a “35%+ controlled entity of a board member.”

The CMTA channelled donor money into a stake in a for-profit drug company controlled by one of its own directors.

In plain terms, a patient charity (the CMTA) channelled donor money into a stake in a for-profit drug company controlled by one of its own directors. The CMTA’s audited financial statements explain how. Under an “alliance agreement,” donors give to the CMTA for Shark Tooth. The CMTA invests 90% of each gift in the company through a SAFE, a contract for future shares, and keeps 10%. In 2025 that came to $162,940 in gifts, $146,646 invested and $16,294 kept, with $8,878 still owed to Shark Tooth at year end. The $248,763 stake includes gifts from 2024.

Who Is Behind Shark Tooth?

The return doesn’t name the board member, but Shark Tooth’s own website does. It was founded in September 2024 by David Apple, a San Francisco tech executive whose young son was diagnosed with CMT1A in early 2022. Apple writes that he joined the CMTA’s board four months after the diagnosis and then studied the science through “biotech courses and reading many medical publications.” The company’s unusual and seemingly incongruent name is supposed to be a pun on how the French surname “Charcot” is pronounced, as in “Charcot…Tooth.”

Apple still sits on the CMTA board, which lists him as the chief business officer of a sports-tech company and an angel investor. His board biography doesn’t mention Shark Tooth.

Apple isn’t the only CMTA insider involved. Shark Tooth’s team page lists two more CMTA directors, John Svaren (as “Chair CMTA SAB”), Steven Scherer, and Charlotte Sumner of the CMTA’s Scientific Advisory Board. It also lists Tom Dubensky as on the “Board of CMTA,” though he isn’t on the CMTA’s board page or its 2025 return.

The same homepage that asks for “tax-deductible donations” pitches investors on a “$14B per year” US market for CMT1A.

Shark Tooth describes its work as “drug assembly.” Instead of discovering new drugs, it funds labs to test whether technologies they already have could treat CMT1A. Its homepage names no drug candidate. It lists four partners: ENCell, NRC Canada, South Park Commons, and the CMTA.

The same homepage that asks for “tax-deductible donations” pitches investors on a “$14B per year” US market for CMT1A. The deduction comes from the CMTA: by the audit’s account, those gifts are made to the charity, which then invests most of each one in the company.

What AI Has and Hasn’t Delivered

Shark Tooth’s homepage also says “new AI tools now enable much faster development of therapeutic approaches.” There is something to that, but the record so far is thinner than the enthusiasm may suggest. The clearest win for AI drug repurposing did not happen within the context of neuromuscular disease. It came early in the pandemic, when BenevolentAI’s software flagged baricitinib, an arthritis drug, as a possible COVID-19 treatment.1 Large trials bore it out, and the FDA approved it for hospitalized adults in May 2022. AI-designed new molecules appear to get through early safety trials more often than conventionally discovered ones, but in the first systematic look they did no better than average in Phase 2, where drugs first have to show they work.2 As of October 2026, no drug invented with AI has been approved anywhere. The furthest along, Insilico Medicine’s rentosertib for pulmonary fibrosis, began a Phase 3 trial in China this summer.

As of October 2026, no drug invented with AI has been approved anywhere.

The setbacks are just as real. BenevolentAI’s own lead drug failed a mid-stage eczema trial in 2023. Recursion, which absorbed its rival Exscientia, cut several clinical programs and a fifth of its staff in 2025. Isomorphic Labs, the AlphaFold spin-out, has pushed back its first human trials. AI can make better guesses faster, but every guess still has to pass the same slow, expensive clinical trials, and that is where most attempts fail. Shark Tooth hasn’t said what its AI tools have found for CMT1A, or how they would speed the path to a treatment, so for now the claim is based on hope rather than a record of results.

On the Dad to Dad podcast in October 2025, Shark Tooth was described as a for-profit company that had raised about $650,000, mostly from individual supporters, with no institutional or venture investors yet. Apple said he had come to believe treatments are unlikely to come from nonprofits and usually come from for-profit companies. Some of those “individual supporters” Apple was referring to were likely donors giving through the CMTA. If the CMTA’s $248,763 stake is part of that $650,000, more than a third of the company’s money passed through the charity. Neither the audit nor the podcast settles the question of whether the CMTA and its individual donors are indeed funnelling this much money to Shark Tooth.

More Than One Deal

The equity stake isn’t the only tie. A CMTA research project page describes a study, led by Umar Iqbal, of a delivery system to carry RNA medicines into the Schwann cells damaged in CMT1A. It is funded “with combined support totalling $102,968 from the CMTA, Shark Tooth Bio, and the National Research Council Canada.” Iqbal is a research scientist at the NRC, a federal agency funded by Canadian taxpayers. So an American charity, a Canadian government lab and a director’s for-profit American company are paying for the same research. Under the NRC’s own policy, inventions made with its staff, facilities or funds belong to the Crown, and every NRC contract spells out who gets the rights to anything new.3 Nothing public says what this one gives Shark Tooth. If the study works, a licence to the result could be worth a great deal to the company and its investors, the CMTA among them.

The Canadian government, an American charity, and its director David Apple’s for-profit company, Shark Tooth, are all funding the same medical research. Apple and Shark Tooth aim to commercialize the result.

Canadian public research benefiting foreign companies is not new. In February, intellectual-property lawyer Natalie Raffoul and tech executive Neil Desai argued in The Globe and Mail that Ottawa should stop giving billions in research funding to foreign firms.4 The NRC has been here before. Ottawa spent nearly $130 million building an NRC vaccine plant for the American company Novavax, which had produced no usable shot by 2024.5 And Glybera, a Canadian-developed gene therapy for a rare disease, was licensed abroad, priced at about $1 million and withdrawn.6

A charity that owns part of a company has a financial interest in that company’s success.

Shark Tooth also isn’t the CMTA’s only bet on a private, for-profit American company. The CMTA has committed $100,000 to EverTree Bio, another CMT1A startup, after testing its approach in the CMTA’s own “Preclinical Toolbox.” Its audit lists four private holdings worth $751,829 at the end of 2025: preferred stock in Armatus Bio ($253,066), a promissory note from Elpida ($150,000), EverTree ($100,000) and Shark Tooth ($248,763). The CMTA bought $470,788 of these “programmatic investments” in 2025 alone. None is publicly traded, so their values are the CMTA’s own estimates. Investing in companies, sometimes called venture philanthropy, is a legitimate and growing practice among disease charities. But it raises the stakes of every conflict of interest, because a charity that owns part of a company has a financial interest in that company’s success.

What the Return and Audit Say, and What They Don’t Say

To its credit, the CMTA disclosed the Shark Tooth deal, as the law requires, and its audit explains how it works. But they leave some questions unanswered:

The return calls all 17 directors “independent,” including the one whose company received the investment.

  • Independence. The return reports 17 voting directors and calls all 17 independent, including the director whose company received the investment.
  • Conflict management. The audit says the board member who owns part of Shark Tooth recused himself from the decision. It doesn’t say who approved the deal, or whether Svaren and Scherer, the other directors on Shark Tooth’s team page, took part or hold a stake in the company.
  • Valuation and terms. A SAFE converts into shares later, on terms set now. Nothing public says what those terms are: the valuation cap, any discount, or how much of the company the CMTA could end up owning.
  • What donors are told. Donors who give funds routed to Shark Tooth make a tax-deductible gift to a charity, and 90% of it becomes an investment in a director’s for-profit company. Nothing I can find says how donors are told that.

The Same Pattern in the Grants

Shark Tooth is the starkest example of a wider pattern. The CMTA’s return says its scientific advisers “oversee the selection of the recipients of the research funding.” In 2025, about a quarter of its US research grant dollars, $773,212, went to PsychoGenics, a for-profit lab whose chief commercial officer sits on the CMTA’s Scientific Advisory Board. Roughly another quarter went to projects the CMTA itself says are led by its own advisers. Nothing the CMTA publishes says how those conflicts are handled. I lay out the full list in Who Is Behind the CMTA?

None of this is proof that anyone did anything wrong. A father who builds a company to save his son is easy to admire, and some of the advisers are among the best CMT researchers in the world. The point is that donors, and the patients the money is raised for, have no oversight or insight into how this all works. A charity this entangled with the people it funds owes the public a public account of its decisions that makes it clear who makes the funding decisions, who recuses themself, and why.

Questions for the CMTA

  1. Who approved the Shark Tooth alliance and investment? Did John Svaren, Steven Scherer or Charlotte Sumner take part, and do any of them hold equity in Shark Tooth or receive pay from it?
  2. What are the terms of the CMTA’s SAFE, and how much of Shark Tooth could it become?
  3. How are donors who give for Shark Tooth told that 90% of their gift will be invested in a director’s company?
  4. Is Tom Dubensky on the CMTA’s board, as Shark Tooth’s team page says?
  5. How was the co-funded peptide delivery study chosen, and who reviewed it?
  6. Do scientific advisers recuse themselves from proposals from their own labs, institutions and companies? Will the CMTA publish that policy?
  7. Who will hold the rights to anything the NRC co-funded delivery study produces, and does Shark Tooth have an option or licence to use it?

If the CMTA answers, I’ll publish what it says. If you know more, tell me.

Coming Next: What Does Canada Get?

A follow-up looks at the National Research Council’s part in the CMT1A study: who put in what, who will own the results, and what Canadian taxpayers get in return.

Updated October 12, 2026: added the NRC’s intellectual-property policy and context on Canadian public research benefiting foreign companies.

Notes

  1. Richardson, Peter, et al. 2020. “Baricitinib as Potential Treatment for 2019-nCoV Acute Respiratory Disease.” The Lancet 395 (10223): e30–e31. https://doi.org/10.1016/S0140-6736(20)30304-4. ↩︎
  2. Jayatunga, Madura K. P., et al. 2024. “How Successful Are AI-Discovered Drugs in Clinical Trials? A First Analysis and Emerging Lessons.” Drug Discovery Today 29 (6): 104009. https://doi.org/10.1016/j.drudis.2024.104009. ↩︎
  3. National Research Council Canada, “NRC’s Intellectual Property (IP) Policy,” last modified March 25, 2019, https://nrc.canada.ca/en/research-development/intellectual-property-licensing/nrcs-intellectual-property-ip-policy. ↩︎
  4. Natalie Raffoul and Neil Desai, “Let’s Stop Giving Billions in Research Funding to Foreign Firms,” Globe and Mail, February 22, 2026, https://www.theglobeandmail.com/business/commentary/article-lets-stop-giving-billions-in-research-funding-to-foreign-firms/. ↩︎
  5. John Paul Tasker, “Trudeau’s Promised Made-in-Canada Vaccine Plant Hasn’t Produced Any Shots,” CBC News, May 24, 2024, https://www.cbc.ca/1.7211462. ↩︎
  6. Kelly Crowe, “Canadian Breakthrough That Became the World’s Most Expensive Drug, Then Vanished, Gets Second Chance,” CBC News, October 17, 2019, https://www.cbc.ca/1.5312177. ↩︎

Related on This Blog

Sources

Last updated:

, ,

Comments

Leave a Reply

Related Posts

Discover more from CMT Blog

Subscribe now to keep reading and get access to the full archive.

Continue reading