Sunlight on the CMTA

Canada’s CMT1A Research Partnership: Who Funds It, and Who Gets the Rights?

Line drawing of three linked circles, a lab flask with a maple leaf, a heart, and a shark fin above waves, arranged around a document sealed with a padlock.

Canada’s National Research Council (NRC) is working with the Charcot-Marie-Tooth Association (CMTA), a US charity, and Shark Tooth Biotech, a US startup, on an experimental way to deliver medicine to nerve-supporting cells in CMT1A. The CMTA also holds an investment contract in Shark Tooth, whose founder, David Apple, serves on the CMTA’s board.

These disclosed relationships do not establish wrongdoing. They raise questions about how a public laboratory, a charity and a private company divide research costs, manage overlapping roles, and allocate rights to any resulting inventions.

I’ve begun digging into these questions in earlier posts, “Who is Behind the CMTA?” and “Shark Tooth: The CMTA’s Stake in a Board Member’s Biotech.” What remains unclear about the CMTA-NRC-Shark Tooth relationship is how the research costs are divided, who will control any resulting inventions, and what benefits the agreement provides for Canadians.

Apple says he stepped aside from the CMTA’s relevant decisions. The NRC, which replied to my questions on October 26, says it has contributed no funding to the project, which the CMTA and Shark Tooth fund through grants. The NRC declined to disclose the agreement’s terms, which I’ll continue to pursue under the Access to Information Act. The NRC’s initial reply to my questions is reproduced in full below.

Notably, the CMTA’s project page reports “combined support totaling $102,968 from CMTA, Shark Tooth Bio, and the National Research Council Canada (NRC).” It does not specify the currency or each partner’s contribution. NRC now says it has not contributed funding: the CMTA and Shark Tooth pay for the research through grants, and NRC provides its facilities and the expertise of its scientists. Whether the CMTA’s figure counts the value of NRC’s facilities and staff time is unclear. I’ll also emphasize that collaboration with a government laboratory does not, by itself, establish a government subsidy.

The CMTA was invited to answer my outstanding questions by October 23. On October 19, I granted NRC’s request for more time and told it that publication had moved from October 20 to October 26. NRC replied on October 26. As of my October 27 correspondence check, the CMTA had not sent a further reply to the email address used for these questions. The responses received so far are summarized below, with the full text of each reply.

What the Research Is Trying to Do

Charcot-Marie-Tooth disease (CMT) is a group of inherited conditions affecting nerves outside the brain and spinal cord. It often causes weakness and reduced sensation in the hands and feet, as well as foot and hand deformities. A commonly cited estimate for the globally affected population is about one person in 2,500, although prevalence varies between populations.1

There is no approved treatment that stops or reverses the underlying CMT disease process. Physiotherapy, braces, surgery, and other care can help manage its effects. The NRC collaboration focuses specifically on CMT1A, rather than on all known forms of CMT.

CMT1A usually involves an extra copy of the PMP22 gene. This leads to too much of a protein needed for myelin, the insulating coating around peripheral nerves. Schwann cells make that coating. One treatment strategy is to reduce production of the excess protein.

The NRC project, led by Umar Iqbal, PhD, tests tiny fat-based carriers called lipid nanoparticles, or LNPs. Short protein fragments called peptides are attached to help the carriers reach Schwann cells. Their cargo is small interfering RNA (siRNA), which can reduce production of a selected protein without editing the underlying DNA.

The CMTA announced this one-year project on February 18, 2026. Its June update reports experiments in mouse Schwann cells in which two carrier combinations reduced PMP22 protein levels by approximately 30%. Those are preliminary cell results, not evidence that the approach safely improves disease in animals or people.2

That early progress helps explain why the collaboration is worth pursuing. Getting potential medicines to the right cells remains a major challenge. Questions about governance and commercial rights should be considered alongside the scientific opportunity.

The CMTA Charity’s Investment in Shark Tooth

As I previously examined in Shark Tooth: The CMTA’s Stake in a Board Member’s Biotech, the CMTA’s relationship with this company goes beyond research collaboration.

Note H of the CMTA’s 2025 audited financial statements describes an agreement under which 90% of donations directed toward Shark Tooth research becomes an investment through a Simple Agreement for Future Equity, or SAFE. The CMTA retains 10% for its general mission and administrative support.

A SAFE is a contract that can convert into company shares under specified conditions. It should not be read as proof that shares have already been issued. Apple says he currently owns all issued Shark Tooth shares, while investors hold SAFEs and part-time leaders hold stock options. Future conversion or exercise would reduce his ownership percentage.

The audit reports these figures for 2025, in US dollars:

TransactionAmount (USD)
Donations directed toward Shark Tooth research$162,940
Amount invested in Shark Tooth$146,646
Amount retained by CMTA$16,294
Investment recorded in CMTA’s accounts at year-end (carrying value)$248,763

The year-end balance includes investments made in 2025 from donations received in 2024. It is the amount recorded in the charity’s accounts, not an established sale price or cash return. The audit separately reports $8,878 payable to Shark Tooth at year-end.3

Charities can legitimately invest to advance their missions and potentially earn returns for future work. The governance question here arises because a director of the investing charity also owns the company. The audit says that director recused himself from consideration and approval of the arrangement.

Apple’s account goes further: he says he excluded himself from all CMTA discussions and decisions involving Shark Tooth, including funding for the NRC project and directing donations toward the company’s research. He also says neither he nor Shark Tooth receives CMTA-funded salary, fees, or compensation, and that he draws no salary from Shark Tooth. These are his statements; they do not substitute for the underlying decision records.

The People and Overlapping Roles

Apple’s young son has CMT1A, and his stated motivation is to accelerate treatment development. Shark Tooth’s website dates its founding to September 2024. Delaware records give an incorporation date of September 23, 2024; it registered in California two days later. The California filings name Apple as chief executive, chief financial officer, and secretary. They do not name directors. That omission does not establish that the corporation has no directors.4

Apple says he first discussed the company idea with the CMTA board in February 2024, before incorporating it that September. His CMTA service began in April 2023, as the charity’s 2023 tax return explicitly records. Shark Tooth’s family timeline instead places his joining the board four months after his son’s early-2022 diagnosis; that discrepancy remains unresolved.

Shark Tooth’s scientific advisers include John Svaren, chair of the CMTA’s Scientific Advisory Board, and Tom Dubensky, a former CMTA director. Apple says Dubensky was still a CMTA director when the investment was approved but had not yet become a Shark Tooth scientific adviser. Apple also says none of Shark Tooth’s advisers have received cash or equity compensation from the company.

Website update after my inquiry: Shark Tooth’s team page still described Dubensky as “Board of CMTA” when I checked it on October 15, after contacting Apple and asking about the role. A subsequent check on October 19 found the description changed to “Former CMTA Board Member.” The change followed my inquiry; I cannot establish why it was made.5

The CMTA’s Winter 2025 report lists Dubensky as a special adviser to its board, while its 2025 tax return does not list him as a director and its board webpage does not currently list him as a special adviser. Those are different roles. The unresolved questions concern when his roles changed and whether he participated in the investment decision.6

Such professional overlap can bring useful expertise to rare-disease research. It also makes it important to identify which decisions a person influenced, whether a relevant financial interest existed, and what safeguards applied. An advisory role alone does not establish a financial interest or an improperly influenced decision.

What the Governance Records Show

CMTA chief executive Sue Bruhn says directors and STAR advisory board members provide written conflict statements, disclose potential conflicts at every meeting, and are excluded from discussions and decisions where conflicts exist.

The charity’s 2025 Form 990 adds that its conflict policy is sent to board members and key employees and reviewed by the board’s nominating and governance committee. The separately published STAR advisory-board policy requires disclosure to the chief executive on appointment and gives the chief executive discretion over conflict determinations.7

The STAR document does not expressly set out all the practices Bruhn describes, but it covers advisory boards and may not be the policy governing directors or staff. Its wording cannot establish that those practices lack a written basis elsewhere. I have asked for the current policies, their adoption or revision dates, and how disclosures and recusals were recorded for the Shark Tooth decisions.

Recusal is a relevant safeguard. Assessing how it worked also requires knowing who reviewed and approved the proposals, the terms they approved, and whether other decision-makers had interests requiring disclosure. Those project-specific details have not yet been supplied.

Disclosure, abstaining from a vote, and exclusion from discussions are different safeguards. The relevant policies and decision records would show what was required and how the Shark Tooth decisions were handled.

What Canada Provides and Could Receive

The NRC’s role and the CMTA’s SAFE are distinct arrangements. There is no public evidence that Canadian government funds financed the CMTA’s investment in Shark Tooth.

The CMTA’s project page describes combined support of $102,968 but also labels the same figure “Total CMTA-STAR Project Investment.” How the figure is divided between the CMTA and Shark Tooth, and in what currency, remains undisclosed.

NRC says the partners fund the project through grants and that the research uses NRC facilities and scientific expertise. Its reply does not explain whether those grants cover the full costs of staff time, facilities and materials, or whether NRC absorbs some costs. The agreement and project budget would clarify that distinction.

The NRC’s funding guidance explicitly allows international collaborators where a project benefits Canada and Canadians. It also says many collaborations receive no grant or contribution funding from NRC. These are general rules, not confirmation of this project’s model.8

Intellectual property, or IP, is a different matter. It refers to legal rights over inventions and other research outputs. NRC’s policy seeks economic and social benefits for Canada. Those benefits might include useful knowledge, research capacity, licensing income, jobs, or eventual patient access — not necessarily exclusive Canadian ownership.9 Asked what benefits for Canada it expected, NRC said that if the research succeeds, it “could help advance Canadian expertise in RNA therapeutics for rare diseases.”

NRC describes several models: open research with published results; strategic collaborations that may produce jointly owned inventions; and paid research or technology transfers that may give a partner a commercial licence or ownership rights. A licence permits use under agreed conditions without necessarily transferring ownership. Which model applies here is unconfirmed.10 NRC calls this a “research collaboration agreement” but would not disclose its terms.

Useful rights could increase Shark Tooth’s commercial value and potentially benefit Apple and SAFE investors, including the CMTA. That could coexist with benefits for Canada and patients. The question is whether the actual allocation of costs, rights and obligations appropriately serves the public and charitable purposes involved.

Why the Terms Deserve Scrutiny

This question sits within a wider Canadian policy debate. In February 2026, Natalie Raffoul and Neil Desai argued in the Globe and Mail that federal research-funding rules too readily support foreign firms that commercialize the results abroad. Their critique concerns policy design; it doesn’t directly engage this particular cross-border collaboration between the CMTA, Shark Tooth, and the NRC.11

Senator Colin Deacon (Nova Scotia) has similarly pointed to Canadian-invented patents assigned to foreign firms, including battery research at Dalhousie University supported by Tesla. These examples explain the interest in retaining value from Canadian science. But patent ownership alone cannot establish the full benefits or costs of a particular partnership, and privately funded university work is not necessarily comparable to the NRC project.12

Rare-disease research often depends on international cooperation among public laboratories, charities, universities and companies. Commercial investment can help carry discoveries through testing and development. Fair scrutiny should ask what the partners agreed to, rather than assume that either foreign participation or the possibility of profit makes the arrangement improper.

The Questions the Agreements Could Answer

Who Pays, and Who Signs?

What are each partner’s committed and actual contributions, in what currency, and in cash or in kind? Did NRC pay an external organization, recover research costs, or contribute its own resources? Which legal entities signed which agreements? The three named supporters need not all be parties to the same contract.

Who Controls the Results?

Who owns pre-existing technology and new inventions? Does any partner have exclusive rights, a licence, or an option to negotiate one? Can rights be sublicensed or sold, and are publication rights protected? What payments, development milestones, or rights to reclaim unused technology are provided for?

How Were Conflicts and Public Benefits Assessed?

Who approved the CMTA investment and research support, and which disclosures and recusals were recorded? What did NRC know about the partners’ financial interests? What benefits for Canada were anticipated, and do the terms address Canadian research access, commercialization or eventual patient access and affordability?

The agreement may answer some of these questions; approval records, budgets and related licences may answer others. A safe, effective treatment would benefit patients wherever the developer is based. Whether Canadians receive particular access commitments, or other returns reflecting the public contribution, remains unknown.

Obtaining the Records

Apple says confidentiality obligations prevent him from answering questions about the NRC agreement. NRC acknowledged my October 12 inquiry on October 14, requested an extension on October 16, and replied on October 26. It confirmed the parties and said it had contributed no funding, but said that because “NRC agreements and contracts may contain confidential business, technical, financial and legal information,” it “does not disclose contractual terms or related details.” Its replies are reproduced below.

Canada’s Access to Information Act provides a way to request records under NRC’s control. Commercially sensitive and confidential third-party information may be protected, while reasonably severable non-exempt portions can be released. Seeking the executed agreements, budgets, contribution records, IP provisions, and related licensing arrangements would help establish the facts.

The next step is to establish each partner’s contribution, the rights granted over the research, and the expected benefits for Canada. NRC should release those terms, or a meaningful non-confidential summary, subject to applicable legal protections. I will add further responses and correct anything shown to be inaccurate.

Responses and Reporting Updates

Answers that bear on specific points are reported in the sections above. Each reply is reproduced in full below.

David Apple

On October 12, I sent Apple five questions about his roles as a CMTA director and as Shark Tooth’s founder and chief executive. I sent Shark Tooth separate questions about the NRC project, the CMTA’s investment and its advisers. Apple answered the five questions on October 14; his answers are reported above under The Charity’s Investment in Shark Tooth and The People and Overlapping Roles. He said confidentiality obligations prevent him from answering questions about the NRC agreement, and that Bruhn would respond about the CMTA’s investment and decision-making.

After my October 15 follow-up, Apple corrected the timeline in his first reply: February 2024 is when he discussed the idea with the CMTA board, and September 2024 is when he incorporated the company. He said he would not continue the correspondence. He did not answer whether Dubensky participated in the investment decision, when Dubensky’s CMTA roles began and ended, or whether other CMTA directors, advisers, or staff hold investments in Shark Tooth.

David Apple’s replies in full (October 14 and 15, unedited)

Hi Dan,

Thank you for reaching out. I agree that transparency and clear management of potential conflicts of interest are important to the CMT community. Below are my answers to your questions.

1. What share of Shark Tooth do you own or control?

Shark Tooth Bio is effectively a team of 1 (me). My investors hold SAFE agreements, and my fractional leaders hold stock options. As a result, I currently own 100% of Shark Tooth Bio shares. My ownership will be diluted when the SAFEs convert and options are exercised. The resulting percentage I own will depend on the terms of future financing, but it will very likely remain over 51% after the next round.

2. Which CMTA decisions did you recuse yourself from?

I recused myself from all CMTA discussions and decisions related to Shark Tooth Bio. This includes the investment arrangement, funding for the peptide-LNP CMT1A project with the NRC, and decisions about directing donations to Shark Tooth research.

3. When did you first disclose your interest in Shark Tooth to the CMTA board?

I discussed the idea of founding Shark Tooth with the CMTA board months before incorporating the company in February 2024. I had not conceived of Shark Tooth when I joined the board in April 2023. I proactively disclose conflicts of interest with the CMTA following the CMTA’s disclosure process.

4. Do you or Shark Tooth receive any salary, fees, or other payments funded directly or indirectly by the CMTA?

Neither I nor Shark Tooth receive salary, fees, or other compensation funded directly or indirectly by the CMTA. I also do not currently draw a salary from Shark Tooth. As you accurately pointed out, Shark Tooth has received an investment from the CMTA.

5. Was Tom Dubensky a CMTA director when the CMTA approved its Shark Tooth investment, and did he participate in that decision?

Tom was a CMTA director at the time, but he was not yet a Shark Tooth scientific adviser. Tom is no longer on the CMTA board. As of October 2026, none of Shark Tooth’s advisers have ever received cash or equity compensation from Shark Tooth.

Other topics from your separate email about the NRC project and the CMTA:

– Regarding the NRC project, the agreement is subject to confidentiality obligations, so I cannot answer your questions.

– Sue will respond to you directly regarding the CMTA’s investment and its internal decision-making process.

I hope these answers provide useful clarity. While I may not be able to respond to further questions, I appreciate your interest in our work, and your commitment to transparency.

Warm regards,
David

His reply to my follow-up questions, sent October 15:

Hi Dan,

Thank you for following up. I’d like to clarify the timeline in my previous email: I discussed the idea of Shark Tooth with the CMTA board in February 2024 and incorporated the company in September 2024. Apologies for the confusion.

I appreciate your interest in our work, but I won’t be continuing this correspondence beyond this clarification.

Warm regards,
David

The CMTA

Chief executive Sue Bruhn replied on October 14 to my questions of October 12 and 13. She described the CMTA’s conflict-of-interest practices, reported above under What the Governance Records Show, and said every funded project is announced publicly. She did not supply the project-specific records I asked for.

My October 15 follow-up asked for the current policies and their adoption dates, who approved the Shark Tooth investment and the NRC funding, and any factual errors she wanted corrected. I asked for a reply by October 23. No further reply had reached that address as of October 27; any later reply will be added.

Sue Bruhn’s reply in full (October 14; email footer omitted)

Dan –

I received your emails and have read your 5 blog posts from October 9-13. Thank you for sharing your perspective and for your questions.

CMTA is committed to transparency. We are dedicated to being fair and responsible with donor dollars, open and clear with how those dollars are spent, and are proud of our approach to our mission on behalf of the CMT community.

All Board of Director and CMTA-STAR board members fill out written conflict of interest statements, and are required to share any potential conflicts with any topic at every meeting. If conflicts exist, those members are excluded from all discussions and decisions around that topic.

Every individual project we fund is shared with the community through multiple communication tools, including press releases, social media posts, and on our website.

While I value everyone’s feedback on any topic at the CMTA, there was one disappointing aspect to your blog posts: the targeted attacks on individual community members. I truly hope that in time, you will find the value of community, and the support that can come with it. I note your request to be fully deleted from our community, and we have honored this request.

I wish you well on your journey.

Sue Bruhn
CEO, CMTA

Bruhn did not identify which posts or statements at cmt.blog she was referring to. My October 15 reply asked her to tell me if anything I had published about any person was inaccurate, so I could correct it; as of October 27, she had not identified anything in a further reply to that address.

National Research Council

NRC’s media-relations office acknowledged my October 12 inquiry on October 14. On October 16, it asked for more time while it gathered information from the relevant program and subject-matter experts. I granted the extension on October 19 and moved publication to October 26. NRC replied on October 26. It confirmed that its agreement is with both the CMTA and Shark Tooth, that the two fund the project through grants, and that NRC has contributed no funding; the work is done in NRC facilities with Iqbal’s expertise. It said the CMTA, as grant administrator, is responsible for due diligence and conflict-of-interest processes, and it declined to disclose the agreement’s terms. It did not say when the agreement was signed, how the funding is divided, who holds rights to resulting inventions, or whether NRC knew of the CMTA’s investment in Shark Tooth and Apple’s ownership.

NRC’s October 16 and October 26 messages in full

Hi Dan,

Thank you again for your interest in the National Research Council of Canada (NRC).

We are currently gathering information from the relevant program and subject matter experts to ensure we provide a complete and accurate response to your questions. Would it be possible to get an extension to respond?

We appreciate your consideration and will provide our response as soon as possible. Thank you for your understanding.

Regards,
Media Relations
National Research Council of Canada | Government of Canada

Its reply to my questions, sent October 26:

Hi Dan,

The National Research Council of Canada (NRC) has a research collaboration agreement with Charcot-Marie-Tooth Association (CMTA) and Shark Tooth Bio to explore a targeted RNA delivery platform for Charcot-Marie-Tooth disease type 1A (CMT1A).

The project is supported through grant funding from CMTA and Shark Tooth Bio. The NRC has not contributed funding toward this project; the project’s research activities are being carried out in NRC facilities with expertise from Dr. Umar Iqbal with the NRC’s Life Sciences research division.

This project is still at an early stage, but preliminary results are encouraging. If successful, this research could help advance Canadian expertise in RNA therapeutics for rare diseases.

As the grant administrator, CMTA is responsible for funding decisions related to the grant, including due diligence and conflict of interest processes.

NRC agreements and contracts may contain confidential business, technical, financial and legal information; therefore, the NRC does not disclose contractual terms or related details.

Best regards,
Media Relations
National Research Council of Canada | Government of Canada

The NRC collaboration agreement and the CMTA’s SAFE terms have not been obtained; NRC says it does not disclose contractual terms. Further responses, and any records released under the Access to Information Act, will be added as updates.

Notes

  1. MedlinePlus Genetics, “Charcot-Marie-Tooth Disease,” accessed October 19, 2026, https://medlineplus.gov/genetics/condition/charcot-marie-tooth-disease/. The estimate is approximate and varies between populations. ↩︎
  2. Charcot-Marie-Tooth Association, “Peptide-LNPs Deliver siRNA Against PMP22 in CMT1A,” announced February 18, 2026; June 2026 research update; page updated September 24, 2026, https://cmtausa.org/research-projects/peptide-lnp-cmt1a/. The currency and each partner’s contribution are not specified. ↩︎
  3. Charcot-Marie-Tooth Association, Audited Financial Statements, December 31, 2025, Note H, “Related Party Transaction – Mission-Related Investment,” 11, https://cmtausa.org/wp-content/uploads/2026/05/2025-Audited-Financials.pdf. The note also reports $8,878 payable to Shark Tooth at year-end. ↩︎
  4. Delaware Department of State, Division of Corporations, “Shark Tooth Biotech Corporation, File Number 5208523,” Entity Search, accessed October 15, 2026, https://icis.corp.delaware.gov/ecorp/entitysearch/namesearch.aspx; California Secretary of State, Shark Tooth Biotech Corporation (entity number 6400890), “Statement and Designation – Out-of-State Stock Corporation,” filed September 25, 2024, “Statement of Information,” filed September 22, 2025, and “Statement of Information,” filed July 21, 2026, bizfile Online, https://bizfileonline.sos.ca.gov/search/business. ↩︎
  5. Shark Tooth Biotech, “Our Team,” https://www.sharktooth.bio/our-team. The description “Board of CMTA” remained when checked on October 15, 2026, after my inquiry. An October 19 check found it changed to “Former CMTA Board Member.” The timing does not establish the reason for the update. ↩︎
  6. Charcot-Marie-Tooth Association, “Forms 990 for 2017–2025,” ProPublica Nonprofit Explorer, https://projects.propublica.org/nonprofits/organizations/222480896; Charcot-Marie-Tooth Association, The CMTA Report, Winter 2025 (2025), https://cmtausa.org/wp-content/uploads/2026/01/2025-Winter-CMTA-Report_Download_small.pdf; Charcot-Marie-Tooth Association, “Board of Directors,” archived September 16, 2025, and April 12, 2026, Internet Archive, https://web.archive.org/web/20250916040613/https://cmtausa.org/board-of-directors/ and https://web.archive.org/web/20260412085630/https://cmtausa.org/board-of-directors/. See also 2025 Form 990 and 2023 Form 990, printed page 7. ↩︎
  7. Charcot-Marie-Tooth Association, 2025 Form 990, Schedule O, final PDF page; CMTA-STAR Advisory Board Confidentiality and Conflict of Interest Policy, “Scope” and “Procedure.” The STAR document applies to advisory boards, not necessarily to directors or staff. ↩︎
  8. National Research Council Canada, “Grant and Contribution Funding for Collaborators,” https://nrc.canada.ca/en/research-development/research-collaboration/grant-contribution-funding-collaborators, sections on eligibility and whether funding is available for all collaborations. ↩︎
  9. 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: “First and foremost, the NRC is responsible for managing its intellectual property (IP) to drive socio-economic benefits for Canada.” ↩︎
  10. National Research Council Canada, “Engaging with the NRC: Options for Intellectual Property,” last modified October 2, 2026, https://nrc.canada.ca/en/research-development/intellectual-property-licensing/engaging-nrc-options-intellectual-property. ↩︎
  11. 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/. The summary here follows the article’s published subtitle. ↩︎
  12. Mark Lowey, “Government Must Stop IP Supported by Public Funding from Flowing to Other Countries and Not Benefitting Canada,” Research Money, December 11, 2024, https://researchmoneyinc.com/article/government-must-stop-ip-supported-by-public-funding-from-flowing-to-other-countries-and-not-benefitting-canada. These figures come from advocates for IP reform, as the article reports them. ↩︎

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