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Sunlight on the CMTA

Who Is Behind the CMTA?

Dan Knauss

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Line drawing of four icons evenly spaced on a circle and joined by clockwise arrows: a boardroom table seen from above, a pair of dollar coins, a lab flask and a single person, so the money circles back to where it started.

In 2025, half the money the CMTA granted for US research went to projects led by its own advisers, or to a company one of them helps run. The CMTA’s only published rule for those advisers’ conflicts leaves every decision about them to its chief executive.

The US-based Charcot-Marie-Tooth Association describes itself as the largest private funder dedicated solely to CMT.1 It funds labs, runs a research strategy, publishes a genetics guide, and speaks for patients in Canada as well as the United States. So it’s fair to ask who runs it, what scientific or medical training stands behind what it tells patients, and where its money goes.

Everything below comes from the CMTA’s own staff, board and advisory board pages as they read on October 10, 2026, its IRS Form 990 tax returns as published by ProPublica’s Nonprofit Explorer, its audited financial statements, and a few outside biographies. Unless I say otherwise, the figures are from its return for 2025, filed in May 2026.

The Staff

The CMTA’s staff directory lists 19 people, including several consultants; its tax return reports 14 employees.2 Most work in fundraising, events, marketing, community programs and technology. Only a handful list any scientific or health training:

PersonRoleTraining, as stated2025 pay
Sue BruhnChief Executive OfficerBS in chemistry (Iowa State), PhD in chemistry (MIT). A career biotech executive: Shire, then CEO of Promedior, Proclara Biosciences and Tiaki Therapeutics before joining the CMTA in November 2023.$300,000
Katherine ForseyChief Research OfficerBSc in molecular cell biology and PhD in biology (University of York). Her doctorate, funded by industry, studied metabolic enzymes in early embryo development.$135,441
Steve LinConsultant, Director of R&D AlliancesBiochemistry degree (Northwestern), PhD (Washington University in St. Louis), postdoc at Dana-Farber. Biotech research and business roles.$180,000 (contractor)
Cassidy MillerResearch Project ManagerMHSA (health services administration)Not reported
Kenny RaymondHead of CommunicationsNo completed degree listed beyond a 2007 associate’s in engineering. His CMTA profile says he is pursuing a master’s in genetics at Arizona State; his LinkedIn profile lists a bachelor’s and a master’s in communication in progress.Not reported
Sources: CMTA staff profiles and announcements; Travere Therapeutics board biography (Bruhn); Raymond’s LinkedIn profile; CMTA Form 990 for 2025, Part VII. A 990 only names staff paid more than $100,000.

No one on the CMTA’s staff is a physician, a neurologist, a clinical geneticist or a genetic counsellor. The two people who lead its research are PhD scientists from outside neurology: a chemist with a long career in drug-company leadership, and a biologist whose doctorate was in embryo metabolism. Forsey has a personal stake, too; her profile says CMT affects four generations of her family.3

That matters when the CMTA speaks about genetics. Its most visible genetics voice is its head of communications, whose free “definitive guide” to CMT genes I reviewed in The Sloth’s Taxonomy. The only endorsement printed on his follow-up book comes from Forsey, his colleague, who calls the guide “an essential reference text.”4 That is a research administrator vouching for a co-worker, not an independent geneticist reviewing his work.

The Board of Directors

The CMTA’s board is mostly business people: finance, technology, insurance, mortgage lending and law. Many are CMT patients or parents of children with CMT. The current chair, Wendy Arnone, is a retired health insurance executive with a nursing degree and an MBA. The 2025 return lists 17 voting directors and calls all 17 independent.5

The board’s medical and scientific members are:

  • Steven Scherer, MD, PhD, professor of neurology at the University of Pennsylvania, a leading CMT researcher.
  • Michael Shy, MD, professor of neurology and pediatrics at the University of Iowa, who leads the Inherited Neuropathy Consortium. The INC’s own homepage says it is funded by the CMTA.6
  • John Svaren, PhD, a Schwann cell researcher at the University of Wisconsin–Madison, who chairs the CMTA’s Scientific Advisory Board.
  • Bernard Coulie, MD, PhD, CEO of Pliant Therapeutics, and David Stark, MD, a pediatric neurologist who is now chief medical officer of the trading firm Citadel. Both are CMT parents.
  • Patricia Verduin, PhD, retired chief science officer of Colgate-Palmolive and a CMT parent.

Another director, David Apple, founded a for-profit CMT1A drug company, Shark Tooth Biotech, in 2024. In 2025 the CMTA invested donations earmarked for Shark Tooth in the company, and held a $248,763 stake at year end.7 Shark Tooth’s own team page also lists two more CMTA directors, Steven Scherer and John Svaren, and a member of the CMTA’s Scientific Advisory Board, Charlotte Sumner.8 I tell that story in Shark Tooth: The CMTA’s Stake in a Board Member’s Biotech.

The Advisers Who Pick the Grants

The CMTA’s tax return says it uses “a scientific advisory board of research and clinical experts to oversee the selection of the recipients of the research funding and to write the grants and contracts with these researchers.” (A line earlier in the same return says a “medical research consultant” does that job.)9 Its CMTA-STAR Advisory Board has three parts:

  • Scientific Advisory Board, which evaluates research proposals: John Svaren (chair), Brian Popko, Bruce Conklin, Charlotte Sumner, Frank Baas, Jun Li, Klaus-Armin Nave, Kleopas Kleopa, Mario Saporta, Maurizio D’Antonio, Robert Burgess, Scott Harper, Stephan Züchner, Steven Gray, Steven Scherer, Taleen Hanania and Vincent Timmerman.
  • Therapy Expert Board: Christopher Klein, Claes Wahlestedt, David Herrmann, Lars Knutsen and Tage Honoré.
  • Clinical Expert Board, co-chaired by Mary Reilly and Michael Shy, with Christopher Klein, David Herrmann, Davide Pareyson, Diana Bharucha-Goebel, Joshua Burns, Richard Finkel, Steven Scherer and Vera Fridman.10

These are serious CMT researchers, and many of them are the people the CMTA funds. Here are the CMTA’s 2025 grants to US organizations, from Schedule I of its return, matched against its own advisory board pages:

Recipient2025 grantLink to a CMTA adviser or director
University of Rochester$1,045,708Home institution of adviser David Herrmann, who leads the CMTA-funded ACT-CMT study there (the return doesn’t name the project)
PsychoGenics Inc. (for-profit)$773,212Adviser Taleen Hanania is its chief commercial officer; it runs the CMTA’s rodent testing
GENESIS Project Foundation$423,000Funds a project led by adviser Stephan Züchner
Gladstone Institutes$300,000Funds gene-editing work led by adviser Bruce Conklin
Albany Medical College$140,670None found
University of California San Diego$90,860None found
University of Pennsylvania$52,925Home institution of director and adviser Steven Scherer, an ACT-CMT site leader
University of Wisconsin–Madison$25,000Home institution of director and advisory board chair John Svaren, whose lab tests ACT-CMT blood samples
Henry M. Jackson Foundation$20,000None found
Cleveland Clinic Lerner Research Institute$15,446None found
Children’s National Medical Center$10,000None found
The Jackson Laboratory$5,377Home institution of adviser Robert Burgess
Sources: CMTA Form 990 for 2025, Schedule I; CMTA-STAR Advisory Board and profile pages; CMTA project pages for the GENESIS ($423,000) and Gladstone ($300,000) grants; CMTA on ACT-CMT (December 18, 2025).

Of $2.93 million in US research grants, about half, $1.5 million, went to projects the CMTA’s own pages say an adviser leads, or to a company where an adviser is an executive. Counting every grant to an institution where an adviser works would push that to about 90%, but that overstates the conflict: a university is not a person, and an adviser may have nothing to do with a grant to it. The largest grant is probably not one of those cases, though. The CMTA says its ACT-CMT study, led by adviser David Herrmann at Rochester, is “supported by $1.2M from CMTA,” which would likely account for most of the $1.05 million Rochester received.11 Another $380,160 went abroad, mostly to Europe, where the return doesn’t name the recipients.

Kind of tie, 2025AmountShare of US grants
A company where an adviser is an executive (PsychoGenics)$773,21226%
Projects the CMTA says an adviser leads (GENESIS, Gladstone)$723,00025%
University of Rochester, where adviser David Herrmann leads ACT-CMT (project not named in the return)$1,045,70836%
Other institutions where an adviser works, project unknown (Penn, Wisconsin, Jackson Laboratory)$83,3023%
No adviser tie found$276,9769%
Not itemized (grants of $5,000 or less)$31,7361%
Total grants to US organizations$2,933,934100%
Sources: CMTA Form 990 for 2025, Part IX, line 1, and Schedule I; CMTA-STAR Advisory Board profiles; CMTA on ACT-CMT (December 18, 2025). Penn’s Steven Scherer and Wisconsin’s John Svaren also have roles in ACT-CMT.

Overlap like this is common in rare-disease research, where the field is small and the best judges of a proposal are often its competitors and collaborators. But the usual safeguards are written down: who recuses from what, and how conflicts are reviewed. The CMTA’s return says only that its conflict-of-interest policy “is sent out to all board members and key employee and reviewed by the nominating and governance committee.”12 Its 2025 audit adds one case: the director who owns Shark Tooth recused himself from the decision to partner with it.13 For the advisers who review grants, the CMTA does post a conflict-of-interest policy covering its three STAR advisory boards. I missed it when I first published this post. It says advisers must disclose their conflicts to the CEO when they are appointed, and that every decision about whether a conflict interferes with their duties is “exclusively vested in and subject to the sole discretion of the CEO of the CMTA.”14 The policy carries no date. It says nothing about advisers stepping aside from proposals they have a stake in, about updating their disclosures after appointment, or about anyone other than the CEO reviewing a conflict, including one that involves the CEO or the CMTA’s own investments. It also makes everything the advisers discuss about proposals and funding confidential.

Where the Money Goes

The CMTA tells donors that “ninety cents of every dollar CMTA spends” goes to research and improving life with CMT.15 Its 2025 return does put 90.7% of spending under “program services.”16 But that category includes staff, camp, events, information technology and office costs. Here is what the CMTA actually spent its $7.36 million on:

Spending, 2025AmountShare
Research grants to US organizations$2,933,93440%
Research grants abroad$380,1605%
Patient support and travel help$28,5570.4%
Total grants paid out$3,342,65145%
Staff pay, benefits and payroll taxes$1,566,78421%
Consultants, accounting and legal fees$697,2419.5%
Events$441,0106%
Camp$426,9596%
Information technology$335,5684.6%
Office$315,1214.3%
Conferences and meetings$158,5102.2%
Advertising and miscellaneous$71,9811%
Source: CMTA Form 990 for 2025, Part IX.

So about 45 cents of each dollar left the CMTA as grants in 2025, up from about 40 cents in 2024. The rest was spent by the CMTA itself. Some of that is real patient service, like camp. But “ninety cents” is not what most donors will hear it to mean.

The CMTA advertises a four-star rating from Charity Navigator and a Platinum Seal of Transparency from Candid. Neither looks at the questions above. Charity Navigator scores ratios and policies; Candid’s seal rewards how much an organization publishes about itself.

Two more things deserve a closer look. Revenue was $6.86 million against $7.36 million in spending, a $492,000 deficit. The return also shows net assets falling from $9.55 million to $6.06 million, but most of that drop is bookkeeping, not spending. In 2025 the CMTA switched from modified cash accounting to standard accrual accounting, and its audited financial statements restate the opening balance at $6.55 million on the new basis, largely because research grants it had committed but not yet paid now count as liabilities ($1.96 million was still owed at year end). The actual decline in 2025 was the $491,794 deficit. The audit also counts $194,064 in fundraising-event costs that the return nets out, so it puts total 2025 spending at $7.55 million, of which grants were 44%.17

The “Advisory Board”

The CMTA also has a separate Advisory Board, which it says exists to advise on “important, but not neurological, issues.”18 Its members include genetic counsellors, physical and occupational therapists, orthotists, a podiatrist, an orthopaedic surgeon, a pulmonologist, social workers and patient advocates. Several are excellent, practical people to hear from.

It is also where some of the CMTA’s lay voices have gained their titles. Raymond’s Amazon author bio says he served on the Advisory Board “as a CMT genetics expert” and a “CMT-related respiratory impairment expert.”19 By the CMTA’s own description, neither is what that board is for.

Why This Matters

Most patient charities are run by parents, patients and business people, and that’s how it should be. They raise the money, and they hire and fund real specialists to do the science. The CMTA does fund real specialists, and some of them sit on its boards.

The trouble starts when the lines blur: when a communications head is billed as a genetics expert, when the research officer’s blurb is the only endorsement on his book, when the research the CMTA cites is research it pays for, and when several of the people who advise on its grants lead the projects that receive them. Patients and donors can’t tell which voice is which, or who is paying whom. They should be able to.

What I Still Don’t Know

  • Whether the University of Rochester grant is for ACT-CMT, as seems likely, and who received the grants abroad
  • Whether the CEO has ever required an adviser to step aside from a proposal under the advisory boards’ conflict policy, and who reviews conflicts that involve the CEO or the CMTA’s own investments
  • Who approved the Shark Tooth investment, and whether the other CMTA directors on Shark Tooth’s team took part
  • Forsey’s publication record

If you know something I’ve missed or got wrong, tell me.

Corrections and Updates

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.

October 15, 2026: Update. David Apple told me he owns all of Shark Tooth’s shares for now; its investors, including the CMTA, hold SAFEs. I now describe him as the director who owns Shark Tooth, not part of it.

October 13, 2026: Correction. An earlier version of this post said that nothing on the CMTA’s website explained how conflicts are handled for the advisers who review grants. The CMTA does post a conflict-of-interest policy for its STAR advisory boards. I’ve added what it says and revised the opening line to match.

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