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

Dan Knauss

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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. A policy for its grant advisers leaves the rest to its chief executive’s discretion.

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 founded and owned 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 founded and owned 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. The site says the company was founded in September 2024 by David Apple, a San Francisco tech executive whose young son was diagnosed with CMT1A in early 2022. State records agree: Shark Tooth Biotech Corporation was incorporated in Delaware on September 23, 2024, and registered in California two days later.1 Apple told me he first discussed the idea with the CMTA board in February 2024. The site also says he joined the CMTA’s board four months after the diagnosis, which would be around May 2022, but the CMTA’s tax returns list him as a director from April 2023, and Apple confirmed that date to me. He writes that he 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.”

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

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”) and Steven Scherer, as well as Charlotte Sumner of the CMTA’s Scientific Advisory Board. It also lists Tom Dubensky as on the “Board of CMTA.” The CMTA’s own records don’t agree on his role. Its tax returns list him as a director through 2024 but not on its 2025 return. Its Winter 2025 report lists him as one of three special advisers to the board, but its board page doesn’t list him in any archived version I checked: in September 2025 it named no special advisers, and since at least April 2026 it has named two, Bruce Chizen and Alan Korowitz.2 Apple told me Dubensky was a CMTA director when the CMTA approved its investment in Shark Tooth and is no longer on the board.

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.3 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.4 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.5 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.6 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 2024.7 And Glybera, a Canadian-developed gene therapy for a rare disease, was licensed abroad, priced at about $1 million and withdrawn.8

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 Shark Tooth recused himself from the decision. Apple told me he recused himself from all CMTA discussions and decisions about Shark Tooth. 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. The CMTA’s only published rule for those advisers’ conflicts, a policy for its STAR advisory boards, leaves every decision about them to its chief executive. 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. Shark Tooth’s team page lists Tom Dubensky on the “Board of CMTA,” and the CMTA’s Winter 2025 report lists him as a special adviser to the board. What is his role, and what was it when the Shark Tooth alliance was approved?
  5. How was the co-funded peptide delivery study chosen, and who reviewed it?
  6. The advisory boards’ conflict policy leaves every conflict decision to the CEO. Has the CEO ever required an adviser to step aside from a proposal, and who reviews conflicts that involve the CEO or the CMTA’s own investments?
  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.

Read Next: What Does Canada Get?

The follow-up, Canada’s CMT1A Research Partnership: Who Funds It, and Who Gets the Rights?, 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.

Updates and Corrections

October 15, 2026: The CMTA’s response. The CMTA’s chief executive, Sue Bruhn, replied to my questions on October 14 without answering them specifically. She wrote that all CMTA directors and STAR advisory board members “fill out written conflict of interest statements, and are required to share any potential conflicts with any topic at every meeting,” and that members with conflicts “are excluded from all discussions and decisions around that topic.” Those practices go beyond what the CMTA’s published STAR advisory board policy expressly requires; that policy has advisers disclose conflicts to the chief executive and leaves decisions about them to the chief executive. The CMTA hasn’t provided documentation of these practices; I’ve asked for the written policies and the meeting records. Her reply will be quoted with the next post in this series.

October 15, 2026: David Apple’s replies. Apple answered my questions on October 14 and declined to answer follow-up questions on October 15. His replies will be published in full with the next post in this series. In brief:

  • He says he owns all of Shark Tooth’s shares for now. Its investors, including the CMTA, hold SAFEs, and its part-time leaders hold stock options. I now describe the company as owned, not part-owned, by a CMTA director.
  • He says he recused himself from all CMTA discussions and decisions about Shark Tooth, including the investment, the funding of the NRC project and the directing of donations, and that neither he nor Shark Tooth receives pay funded by the CMTA.
  • He first wrote that he incorporated Shark Tooth in February 2024. After I pointed to Delaware’s record of its incorporation on September 23, 2024, he clarified that February 2024 is when he discussed the idea with the CMTA board.
  • He says he joined the CMTA board in April 2023, as the CMTA’s tax returns show. Shark Tooth’s website says he joined four months after his son’s diagnosis in early 2022.
  • He says Tom Dubensky was a CMTA director, but not yet a Shark Tooth adviser, when the CMTA approved its investment, and is no longer on the CMTA board. Shark Tooth’s team page still lists Dubensky as “Board of CMTA.” I’ve added the state registry dates and what the CMTA’s tax returns, report and board page each say about Dubensky’s role.
  • He declined to answer questions about the NRC project, citing confidentiality.

October 13, 2026: Correction. An earlier version of this post said nothing the CMTA publishes explains how its grant advisers’ conflicts are handled. The CMTA posts a conflict-of-interest policy for its STAR advisory boards, which leaves those decisions to the chief executive. I also changed my description of Shark Tooth from controlled by a CMTA director to founded and part-owned by one (since revised; see October 15), and added the CMTA’s own description of Tom Dubensky as a special adviser to its board.

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

Notes

  1. Delaware Department of State, Division of Corporations, “Shark Tooth Biotech Corporation, File Number 5208523”; California Secretary of State, “Shark Tooth Biotech Corporation, Entity Number 6400890.” ↩︎
  2. Charcot-Marie-Tooth Association, “Forms 990 for 2017–2024”; Charcot-Marie-Tooth Association, “Board of Directors,” archived September 16, 2025, and April 12, 2026. ↩︎
  3. Richardson et al., “Baricitinib as Potential Treatment.” ↩︎
  4. Jayatunga et al., “How Successful Are AI-Discovered Drugs?” ↩︎
  5. National Research Council Canada, “NRC’s Intellectual Property Policy.” ↩︎
  6. Raffoul and Desai, “Let’s Stop Giving Billions.” ↩︎
  7. Tasker, “Made-in-Canada Vaccine Plant.” ↩︎
  8. Crowe, “Canadian Breakthrough.” ↩︎

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