Charcot-Marie-Tooth Association
The Charcot-Marie-Tooth Association (CMTA) is a public charity based in Glenolden, Pennsylvania. It supports research and treatment development for Charcot-Marie-Tooth disease (CMT), alongside services and educational resources for people with CMT and their families.
Charcot-Marie-Tooth Association at a glance
In short: Charcot-Marie-Tooth Association gave $2.9M across 12 grants in 2025 (avg $242K), mostly in New York. 25% of 2025 grantees were new. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $2,902,198
- +85.3% vs 2024
- Grants made (2025)
- 12
- +0.0% vs 2024
- Average grant
- $241,850
- +85.3% vs 2024
- Median grant
- $71,893
- Total assets
- $8,112,362
- -15.0% vs 2024
- New grantees (estimate)
- 25% first-time grantees (3 of 12, 2025; small sample)
- Primary geography
- New York (68% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026. New grantees are estimated by matching recipient names across years (methodology).
How to apply to Charcot-Marie-Tooth Association
- How to Apply
-
Proposals are considered when CMTA invites them; funding is not allocated via open calls.
- Contact
Mailing address: PO Box 105, Glenolden, PA 19036
Phone: (800) 606-2682
Website: https://cmtausa.org
Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Who Charcot-Marie-Tooth Association funds
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2025
The largest 2025 recipient was University of Rochester ($1.0M). Together the top 10 received $2.9M.
Grant Size Distribution
69 grants across all recorded years
The most common grant size was under $50K: 26 grants of 69 (38%).
Geographic Focus
Where this funder awards grants
The 2025 filing lists grants to recipients in multiple states. By share of grant dollars, New York received 68%, Florida 15%, California 13%, Pennsylvania 2%, and Wisconsin 1%. The filing also lists recipients in Maryland, Ohio, Washington, D.C., and Maine.
Grant Distribution by State
Share of 2025 grant dollars across all 12 itemized grants.
States
Cities
Is Charcot-Marie-Tooth Association open to new grantees?
25%
first-time grantees, 2025
In 2025, 3 of 12 grantees (25%) were first-time recipients. With only 12 grantees, that is a small sample: one grantee more or less moves the share by about 8 points. First grants averaged $81K; repeat grants $296K. How we count
Medians: $91K first-time, $53K repeat.
- 58% of 2025 grantees were also funded in 2024. Method
- Giving held roughly steady from 2022 to 2025 (−11%). Method
Estimate from itemized grant lists in IRS Form 990 filings (2020–2025). Recipient names are matched across years, so a renamed or misspelled grantee can look new; grants to individuals are left out. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $1.6M (2024) to $3.2M (2022). In 2025 it made 12 grants totaling $2.9M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Rochester Rochester, NY | CMT Research | $1,045,708 |
| Psychogenics Inc New York, NY | CMT Research | $773,212 |
| The Genesis Project Foundation Miami, FL | CMT Research | $423,000 |
| JD Gladstone Institutes San Francisco, CA | CMT Research | $300,000 |
| Albany Medical College Albany, NY | CMT Research | $140,670 |
| University of California San Diego San Diego, CA | CMT Research | $90,860 |
| University of Pennsylvania Philadelphia, PA | CMT Research | $52,925 |
| University of Wisconsin - Madison Madison, WI | CMT Research | $25,000 |
| Henry Jackson Foundation Bethesda, MD | CMT Research | $20,000 |
| Cleveland Cliniclerner Research Ins Cleveland, OH | CMT Research | $15,446 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $8,112,362 | $6,864,031 | $7,355,825 | $2,902,198 | 12 | $287,629 |
| 2024 | $9,548,719 | $5,778,743 | $5,791,669 | $1,566,163 | 12 | $421,917 |
| 2023 | $9,566,018 | $5,761,508 | $6,291,966 | $2,768,752 | 14 | $77,872 |
| 2022 | $9,861,023 | $10,398,940 | $6,545,390 | $3,243,350 | 14 | $15,898 |
| 2021 | $6,028,701 | $5,168,679 | $4,839,059 | $2,233,076 | 17 | $7,409 |
| 2020 | $5,686,656 | $5,232,342 | $3,903,750 | $2,186,290 | 14 | $23,718 |
Research compiled by Grantable AI from public sources. Last updated September 2026.
Mission & Focus Areas
CMTA’s stated mission is to support the development of new treatments for CMT, improve quality of life for people with CMT, and ultimately find a cure. Its research funding spans work from genetic discovery through clinical-trial readiness.
CMTA’s 2025 grants went to organizations including the University of Rochester, which describes its mission as providing higher education, research, and charitable patient care services. The grants listed in the filing are all designated for CMT research.
Grantmaking
In filing year 2025, CMTA gave 12 grants totaling $2,902,198. Grant amounts ranged from $5,377 to $1,045,708, with a median of $71,892. Among the largest awards were $1,045,708 to the University of Rochester for CMT research; $773,212 to Psychogenics Inc. for CMT research; $423,000 to The Genesis Project Foundation for CMT research; and $300,000 to JD Gladstone Institutes for CMT research.
CMTA’s website says research funding is not allocated through open calls. Its Board of Directors or Chief Research Officer may invite targeted proposals in specific areas of CMT research and treatment development. Invited applicants first submit a Step 1 proposal, limited to three pages and including specific aims, and may be invited to present it at a monthly CMTA-STAR Advisory Board meeting. Applicants asked to proceed submit a Step 2 proposal, including a research plan, preliminary data, budget, timelines, and information about the investigative groups involved. Step 2 proposals are reviewed by relevant scientific, therapy, and clinical experts before CMTA’s Board of Directors makes the funding decision. Indirect costs may not exceed 10% of the total, and repeat submissions are not accepted.
Leadership & Key People
Leadership team and compensation from IRS filings
The 2025 filing lists Suzanne Bruhn as chief executive officer, Jeana Sweeney as chief engagement and gift officer, Katherine Forsey as chief research officer, and Laurel Richardson as director of community outreach. It lists Gilles Bouchard as board chair, Kevin Sami as treasurer, Herbert Beron as secretary, and Wendy Arnone, David Apple, and Dan Chamby as board members.
Charcot-Marie-Tooth Association is led by Suzanne Bruhn, Chief Executive Officer on every filing since 2023; 4 of 21 officers listed in 2025 are compensated.
Officers on the 2025 filing
Suzanne Bruhn
Chief Executive Officer
On filings since 2023
40 hrs/week
$47K (2023) → $300K (2025)
Gilles Bouchard
Board Chair
Chairman → Board Chair, 2025
On filings since 2020
1 hr/week
No compensation reported
Laurel Richardson
Director of Community Outreach
On filings since 2023
40 hrs/week
$102K (2023) → $108K (2025)
Jeana Sweeney
Chief Engagement & Gift Officer
Director of Development → Chief Engagment & Gift Officer, 2021
Chief Engagment & Gift Officer → Chief Engagement & Gift Officer, 2022
On filings since 2020
40 hrs/week
$105K (2020) → $145K (2025)
Katherine Forsey
Chief Research Officer
On filings since 2023
40 hrs/week
$114K (2023) → $135K (2025)
Dan Chamby
Board Member
Director → Board Member, 2024
On filings since 2020
1 hr/week
No compensation reported
David Coldiron
Board Member
Director → Board Member, 2024
On filings since 2020
1 hr/week
No compensation reported
Gary J. Gasper
Board Member
Treasurer → Director, 2023
Director → Board Member, 2024
On filings since 2020
1 hr/week
No compensation reported
Herbert Beron
Secretary
On filings since 2020
1 hr/week
No compensation reported
Kevin Sami
Treasurer
Director → Treasurer, 2023
On filings since 2020
1 hr/week
No compensation reported
Craig Zeltsar
Board Member
Director → Board Member, 2024
On filings since 2023
1 hr/week
No compensation reported
David Apple
Board Member
Director → Board Member, 2024
On filings since 2023
1 hr/week
No compensation reported
John Svaren
Board Member
Director → Board Member, 2024
On filings since 2023
1 hr/week
No compensation reported
Michael Shy
Board Member
Director → Board Member, 2024
On filings since 2023
1 hr/week
No compensation reported
Steven Scherer
Board Member
Director → Board Member, 2024
On filings since 2023
1 hr/week
No compensation reported
Bernard Coulie
Board Member
On filings since 2024
1 hr/week
No compensation reported
Jon Pastor
Board Member
On filings since 2024
1 hr/week
No compensation reported
Kevin Marks
Board Member
On filings since 2024
1 hr/week
No compensation reported
Wendy Arnone
Board Member
On filings since 2024
1 hr/week
No compensation reported
Catherine Illingworth
Board Member
New on the 2025 filing
1 hr/week
No compensation reported
David Stark
Board Member
New on the 2025 filing
1 hr/week
No compensation reported
Former officers (12)
- Former: Alan Korowitz (2020–2024) — Board Member
- Former: David Norcom (2020–2024) — Board Member
- Former: Kimberly Magee (2020–2024) — Direcot of Finance & Administrator
- Former: Phyllis Sanders (2020–2024) — Board Member
- Former: Steven O'Donnell (2020–2024) — Board Member
- Former: Thomas Dubensky (2020–2024) — Board Member
- Former: Partricia Verduin Ohd (2024) — Board Member
- Former: Amy Gray (2020–2023) — Chief Executive Officer
- Former: Chris Ouellette (2020–2023) — Director
- Former: Pete Foley (2021–2023) — Director
- Former: Jonathan Pastor (2022–2023) — Director
- Former: Laura Fava (2020–2021) — Director
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $300K, to Suzanne Bruhn (Chief Executive Officer). 4 officers or directors reported compensation on that filing.
Frequently asked questions about Charcot-Marie-Tooth Association
How much does Charcot-Marie-Tooth Association give each year?
Charcot-Marie-Tooth Association gave $2.9M across 12 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $1.6M across 12 grants.
What is Charcot-Marie-Tooth Association's typical grant size?
Charcot-Marie-Tooth Association's median grant in 2025 was $71,893, and its average grant was $241,850, across 12 grants on its 2025 IRS Form 990. Organizations receiving their first grant from Charcot-Marie-Tooth Association that year got $81K on average.
Where does Charcot-Marie-Tooth Association give grants?
Charcot-Marie-Tooth Association gives mostly in New York: 68% of the grant dollars itemized on its 2025 IRS Form 990 went to recipients there. The next largest states were Florida (15%) and California (13%).
Does Charcot-Marie-Tooth Association give general operating support?
Not in 2025: none of the 12 grants with a stated purpose on Charcot-Marie-Tooth Association's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "CMT Research" (12 grants).
Who are Charcot-Marie-Tooth Association's largest grantees?
Charcot-Marie-Tooth Association's largest 2025 grantees include University of Rochester ($1,045,708), Psychogenics Inc ($773,212) and The Genesis Project Foundation ($423,000), according to its 2025 IRS Form 990. Together they received 77% of its itemized 2025 grant dollars.
How large is Charcot-Marie-Tooth Association?
Charcot-Marie-Tooth Association reported $8.1M in total assets on its 2025 IRS Form 990. Its revenue that year was $6.9M.
What does Charcot-Marie-Tooth Association fund?
CMTA’s stated mission is to support the development of new treatments for CMT, improve quality of life for people with CMT, and ultimately find a cure. Its research funding spans work from genetic discovery through clinical-trial readiness. See mission & focus areas ↑
How do I apply for a grant from Charcot-Marie-Tooth Association?
Proposals are considered when CMTA invites them; funding is not allocated via open calls. Eligibility and process details are in the grantmaking section of this profile. See how to apply ↑
What is Charcot-Marie-Tooth Association's EIN?
Charcot-Marie-Tooth Association's EIN (Employer Identification Number) is 22-2480896. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings. Research dossier generated September 2026.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS June 23, 2021)
- Updated Form 990 for fiscal year 2022 (received by the IRS August 21, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS July 30, 2024)
- Updated Form 990 for fiscal year 2021 (received by the IRS August 4, 2022)
- Updated Form 990 for fiscal year 2024 (received by the IRS April 10, 2026)
- Added Form 990 for fiscal year 2025 (received by the IRS May 14, 2026)
- IRS filings on file for fiscal years 2020–2024
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Cite this profile
Grantable. (2026). Charcot-Marie-Tooth Association funder profile. GrantGraph. Retrieved October 15, 2026, from https://grantable.co/funders/charcot-marie-tooth-association-morg_9d2650b475fc43949ff908da9d76ff49
BibTeX
@misc{grantable_222480896_2026,
author = {{Grantable}},
title = {{Charcot-Marie-Tooth Association funder profile}},
howpublished = {GrantGraph},
year = {2026},
url = {https://grantable.co/funders/charcot-marie-tooth-association-morg_9d2650b475fc43949ff908da9d76ff49},
note = {Accessed 2026-10-15. Data licensed CC BY 4.0}
}The figures on this page are open data under CC BY 4.0: reuse them with credit to Grantable and a link. Download the data.
Figures come from Charcot-Marie-Tooth Association's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
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