Charcot-Marie-Tooth Association
Donations deductibleCharcot-Marie-Tooth Association's network
22 peoplei22 people on this map.The large node is the subject of this page. Solid lines are what the register itself records (22). Form 990 filings give names without a person identifier; SEC insider filings carry a CIK.The board
22 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations.Time served and departures are observed across annual filings. Observed time served is a lower bound - a member may have joined before the first year on record. The organisation reported 17 voting members of its governing body on its latest Form 990 Part VI; we list 22 in Part VII (Part VII does not always name every voting member).| Name | Role as filed | Since | On the board |
|---|---|---|---|
| Gilles Bouchard Chair | Chairman | 2018 | 8 yrs |
| Alan Korowitz | Board Member (Thru 2/24) | 2018 | 8 yrs |
| Bernard Coulie | Board Member (Eff 2/24) | 2024 | 2 yrs |
| Craig Zeltsar | Board Member | 2023 | 3 yrs |
| Dan Chamby | Board Member | 2020 | 6 yrs |
| David Apple | Board Member | 2023 | 3 yrs |
| David Coldiron | Board Member | 2019 | 7 yrs |
| David Norcom | Board Member (Thru 9/24) | 2019 | 7 yrs |
| Dr Michael Shy | Board Member | 2023 | 3 yrs |
| Dr Steven Scherer | Board Member | 2023 | 3 yrs |
| Dr Thomas Dubensky | Board Member | 2018 | 8 yrs |
| Gary J Gasper | Board Member | 2024 | 2 yrs |
| Herbert Beron | Company secretary | 2018 | 8 yrs |
| John Svaren | Board Member | 2024 | 2 yrs |
| Jon Pastor | Board Member | 2024 | 2 yrs |
| Kevin Marks | Board Member (Eff 2/24) | 2024 | 2 yrs |
| Kevin Sami | Treasurer | 2019 | 7 yrs |
| Partricia Verduin OHD | Board Member (Eff 4/24) | 2024 | 2 yrs |
| Phyllis Sanders | Board Member (Thru 2/24) | 2018 | 8 yrs |
| Steven O'Donnell | Board Member (Thru 12/24) | 2018 | 8 yrs |
| Suzanne Bruhn | Chief Executive Officer | 2024 | 2 yrs |
| Wendy Arnone | Board Member (Eff 3/24) | 2024 | 2 yrs |
Officers and senior leadership
6 listediNamed in Part VII as officers, key employees or highest-compensated staff - not board members, shown for completeness.| Name | Title as filed | On the filings |
|---|---|---|
| Amy Gray | Chief Executive Officer (Til 03/2023) | since 2018 |
| Jeana Sweeney | Director of Development | since 2020 |
| Katherine Forsey | Chief Research Officer | since 2023 |
| Kimberly Magee | Director of Finance and Administration | since 2018 |
| Laurel Richardson | Director of Community Outreach | since 2023 |
| Suzanne Bruhn | Chief Executive Officer (From 11/2023) | 2023 |
Pay and hours
year to 31 December 2025iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.| Name | Title as filed | Hours a week | Pay from the organisation | Related organisations | Other |
|---|---|---|---|---|---|
| Suzanne Bruhn | Chief Executive Officer | 40 | $300k | $11k | |
| Jeana Sweeney | Chief Engagement and Gift Officer | 40 | $145k | $6k | |
| Katherine Forsey | Chief Research Officer | 40 | $135k | $7k | |
| Laurel Richardson | Director of Community Outreach | 40 | $108k | $4k | |
| Gilles Bouchard | Board Chair | 1 | $0 | ||
| Kevin Sami | Treasurer | 1 | $0 | ||
| Herbert Beron | Secretary | 1 | $0 | ||
| Wendy Arnone | Board Member | 1 | $0 | ||
| David Apple | Board Member | 1 | $0 | ||
| Dan Chamby | Board Member | 1 | $0 | ||
| David Coldiron | Board Member | 1 | $0 | ||
| Bernard Coulie | Board Member | 1 | $0 | ||
| Gary J Gasper | Board Member | 1 | $0 | ||
| Catherine Illingworth | Board Member | 1 | $0 | ||
| Kevin Marks | Board Member | 1 | $0 | ||
| Jon Pastor | Board Member | 1 | $0 | ||
| Dr Steven Scherer | Board Member | 1 | $0 | ||
| Dr Michael Shy | Board Member | 1 | $0 | ||
| David Stark | Board Member | 1 | $0 | ||
| John Svaren | Board Member | 1 | $0 | ||
| Craig Zeltsar | Board Member | 1 | $0 |
Colorado roster
20 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20253027517). Titles are as filed; some entries are registered agents or custodians of records rather than board members. Source: data.colorado.gov, public domain.| Name | Title as filed |
|---|---|
| David Norcom | Board Member |
| Suzanne Bruhn | Chief Executive Officer |
| Herbert Beron | Secretary |
| Bernard Coulie | Director |
| David Coldiron | Board Member |
| Gilles Bouchard | President |
| Patricia Verduin | Director |
| Kevin Marks | Director |
| Craig Zeltsar | Director |
| Dan Chamby | Director |
| Kimberly Magee | |
| Jeana Sweeney | Chief Engagement and Gift Officer |
| Gary J. Gasper | Board Member |
| Jonathan Pastor | Director |
| Steven O'donnell | Board Member |
| Gilles Bouchard | Chair |
| Thomas Dubensky | Board Member |
| David Apple | Board Member |
| Kevin Sami | Treasurer |
| Kimberly Magee | Director, Finance and Administration |
About
- Legal name
- Charcot-Marie-Tooth Association
- EIN
- 222480896
- Address
- Po Box 105, Glenolden, PA, 19036-0105
- State
- Pennsylvania
- Mission
- Cmta awards research fellowships and grants for research on charcot-marie-tooth diesease. Cmta also hosts bi-annual meetings of all researchers receiving its funding to promote knowledge exchange and synergy. It uses the services of a medical research consultant to oversee the selection of the receipients of the research funding and tp write the grants and contracts with these researchers. (as filed on the Form 990)
- Activity (NTEE)
- G8XZ Voluntary health associations and medical disciplines
- IRS classification
- 501(c)03 (tax-exempt under section 501(c)(3) where shown)
- Classified purpose
- Voluntary Health Associations & Medical Disciplines
- Size band
- 7 (IRS master file code)
- Formed
- 1983
- Principal officer
- Suzanne Bruhn (as named on the Form 990)
- IRS ruling date
- 1 June 1986
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 7, latest 2024
- IRS Publication 78
- PC (contributions deductible)
Most connected
Longest observed on the filings
≥8years on the filingsGilles Bouchard
≥8years on the filingsAlan Korowitz
≥8years on the filingsDr Thomas Dubensky
≥8years on the filingsHerbert Beron
Latest return
year to 31 December 2025iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2025. US dollars, as filed.- Total assets
- $8.1m
- Total liabilities
- $2.1m
- Net assets or fund balances
- $6.1m
- Contributions and grants received
- $5.7m
- Program service revenue
- $811k
- Grants and similar paid out
- $3.3m
- Employees
- 14
- Volunteers
- 125
Filed finances
1 yeariTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.| Tax year | Total revenue | Total expenses | Surplus or deficit |
|---|---|---|---|
| 2024 | $5.8m | $5.8m | Deficit $13k |
As filed on the IRS Form 990. US dollars.
Grants paid
12 listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.| Recipient | Purpose | Amount |
|---|---|---|
| University of Rochester | Cmt research | $1m |
| Psychogenics Inc | Cmt research | $773k |
| The Genesis Project Foundation | Cmt research | $423k |
| JD Gladstone Institutes | Cmt research | $300k |
| Albany Medical College | Cmt research | $141k |
| University of California San Diego | Cmt research | $91k |
| University of Pennsylvania | Cmt research | $53k |
| University of Wisconsin - Madison | Cmt research | $25k |
| Henry Jackson Foundation | Cmt research | $20k |
| Cleveland Cliniclerner Research Ins | Cmt research | $15k |
| Children's National Medical Center | Cmt research | $10k |
| The Jackson Laboratory | Cmt research | $5k |
State registration
1 entityiBusiness-entity registers published by US states. These records are matched to this organisation by name and state, not by EIN, and are labelled as likely matches. Street addresses are not shown.Charcot-marie-tooth Association likely matchiMatched by exact name and state (and ZIP where shown). State registers do not publish EINs, so this is not a confirmed match. Source: Pennsylvania Department of State, business entities (data.pa.gov xvd7-5r2c). Licence: public domain. Data last fetched 18 October 2026.
- State
- Pennsylvania
- Entity type
- Domestic Nonprofit Corporation
- Status
- Active
- Formed
- 7 October 1983
- Registered agent
- Not stated
Officers (2)
- Susan Bruhn President
- Susan Bruhn Governor
City and state of officers are not held in this extract.