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Exposing the CMTA

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; nothing explains the rest.

Let’s jump right into the CMTA’s finances, since no one else appears to be looking. 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.”

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

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 name is a pun on how “Charcot” is pronounced.

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.

He 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, 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 approach 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. The clearest win for AI drug repurposing 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.

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 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 a hope rather than a result.

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

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” 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 whether it is.

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 totaling $102,968 from CMTA, Shark Tooth Bio, and the National Research Council Canada.” So the charity co-funds research alongside its director’s company, research that could benefit that company.

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 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 Don’t

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

  • 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 for 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

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

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 way to check. A charity this entangled with the people it funds owes them a public account of who decides, who recuses, 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?

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

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. ↩︎

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