Families of SMA
Donations deductibleFamilies of SMA's network
27 people5 organisationsi27 people and 5 organisations on this map.The large node is the subject of this page. Solid lines are what the register itself records (27). Violet dotted lines (5) are likely: the same full name sits on the current board of another organisation in the same register and region. Form 990 filings give names without a person identifier; SEC insider filings carry a CIK. It may be a different person.The board
27 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 in the tables. The network map shows same-name matches as likely links only, never as confirmed.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 24 voting members of its governing body on its latest Form 990 Part VI; we list 27 in Part VII (Part VII does not always name every voting member).| Name | Role as filed | Since | On the board |
|---|---|---|---|
| Nick Farrell Chair | Board Chair | 2019 | 7 yrs |
| Allyson Henkel | Director | 2019 | 7 yrs |
| Amy Medina | Director | 2019 | 7 yrs |
| Bakri Elsheikh | Director | 2023 | 3 yrs |
| Bradley A Nunemaker (also filed as Brad Nunemaker) | Treasurer & Vice Chair | 2019 | 7 yrs |
| Brian Snyder | Director | 2019 | 7 yrs |
| Brianna Gross | Director | 2024 | 2 yrs |
| Collin Pollock | Director (Start 4/26/25) | 2025 | 1 yr |
| Corey Braastad | Director | 2019 | 7 yrs |
| Diana Castro | Director | 2023 | 3 yrs |
| Edmund Lee | Director (Through 12/31/24) | 2019 | 7 yrs |
| Gillian Mullins | Director (Through 12/31/24) | 2019 | 7 yrs |
| Jaclyn Greenwood | Director | 2019 | 7 yrs |
| Joe Wiseman | Director | 2024 | 2 yrs |
| John Weber | Director (Start 10/1/2024) | 2025 | 1 yr |
| Kaleen Robinson | Director | 2023 | 3 yrs |
| Karen McRoy-Negrin | Director | 2024 | 2 yrs |
| Kelly Jankowski | Director | 2019 | 7 yrs |
| Marc Ginsky | Director | 2024 | 2 yrs |
| Mark Moore | Director | 2024 | 2 yrs |
| Peter Statile | Director | 2019 | 7 yrs |
| Rachel Brown | Director (Start 4/26/25) | 2025 | 1 yr |
| Rob Lockwood | Director | 2019 | 7 yrs |
| Robert Graham | Director | 2019 | 7 yrs |
| Shannon Zerzan | Director | 2019 | 7 yrs |
| Spencer Perlman | Director | 2019 | 7 yrs |
| Tyler Dukes | Director (Start 4/26/25) | 2025 | 1 yr |
Officers and senior leadership
18 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 Thomasson | Vice President, Marketing & Communication (Through | 2024 |
| Colleen McCarthy O'Toole | Vice President, Family Support | since 2019 |
| Erin Kelly | VP, Development | since 2019 |
| Erin Oganesian | VP, Development | 2021 |
| Jackie Glascock | Vice President of Research | since 2023 |
| Jamie Gibson | Chief Development Officer | since 2024 |
| Jesse Aynes | Vice President of Development | 2025 |
| Jill Jarecki | Chief Scientific Officer | since 2019 |
| Kenneth Hobby | President | since 2019 |
| Leslie Humbel | Sr. Director Marketing & Communication | 2021 |
| Marline Pagan | Vice President, Finance & Opperations | since 2019 |
| Mary Curry | Vice President, Clinical Research & Care | 2025 |
| Mary Schroth | Chief Medical Officer (Through 3/31/25) | since 2019 |
| Maynard Friesz | Vice President, Policy & Advocacy | since 2021 |
| Michelle Castle | Vice President of Compliance Development | 2023 |
| Pamela Swenk | Chief of Staff Officer | 2023 |
| Rosangel Cruz | Sr. Director Clinical Trials | since 2019 |
| Teresa Stewart | Director of Clinical Care Ops | 2020 |
Pay and hours
year to 30 June 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 |
|---|---|---|---|---|---|
| Kenneth Hobby | President | 70 | $329k | $20k | |
| Jamie Gibson | Chief Development Officer | 60 | $266k | $29k | |
| Mary Schroth | Chief Medical Officer (Through 3/31/25) | 60 | $218k | $10k | |
| Marline Pagan | Chief Operating Officer | 60 | $209k | $31k | |
| Colleen McCarthy O'toole | Sr Vice President, Communi | 60 | $175k | $27k | |
| Maynard Friesz | Vice President, Policy | 50 | $150k | $14k | |
| Jackie Glascock | Vice President of Research | 50 | $146k | $7k | |
| Mary Curry | Vice President, Clinical Research & Care | 50 | $138k | $20k | |
| Jesse Aynes | Vice President of Development | 50 | $135k | $10k | |
| Robert Graham | Director | 2 | $0 | ||
| Peter Statile | Director | 2 | $0 | ||
| Mark Moore | Director | 2 | $0 | ||
| Marc Ginsky | Director | 2 | $0 | ||
| Karen McRoy-Negrin | Director | 2 | $0 | ||
| Bakri Elsheikh | Director | 2 | $0 | ||
| Joe Wiseman | Director | 2 | $0 | ||
| Rob Lockwood | Director | 2 | $0 | ||
| Kelly Jankowski | Director | 2 | $0 | ||
| Amy Medina | Director | 2 | $0 | ||
| Gillian Mullins | Director (Through 12/31/24) | 2 | $0 | ||
| Edmund Lee | Director (Through 12/31/24) | 2 | $0 | ||
| Diana Castro | Director | 2 | $0 | ||
| Brian Snyder | Director | 2 | $0 | ||
| Brianna Gross | Director | 2 | $0 | ||
| Jaclyn Greenwood | Director | 2 | $0 | ||
| Corey Braastad | Director | 2 | $0 | ||
| Allyson Henkel | Director | 2 | $0 | ||
| Collin Pollock | Director (Start 4/26/25) | 2 | $0 | ||
| Rachel Brown | Director (Start 4/26/25) | 2 | $0 | ||
| Tyler Dukes | Director (Start 4/26/25) | 2 | $0 | ||
| Kaleen Robinson | Director | 2 | $0 | ||
| Spencer Perlman | Director | 2 | $0 | ||
| Nick Farrell | Board Chair | 5 | $0 | ||
| Bradley A Nunemaker | Treasurer & Vice Chair | 5 | $0 | ||
| Shannon Zerzan | Director | 5 | $0 | ||
| John Weber | Director (Start 10/1/2024) | 2 | $0 |
Colorado roster
25 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20263018305). 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 |
|---|---|
| Brianna Gross | Director |
| Spencer Perlman | Director |
| Amy Medina | Director |
| Collin Pollock | Director |
| Kenneth Hobby | President and CEO |
| Brad Nunemaker | Vice President |
| Rachael Brown | Director |
| John Weber | Director |
| Nick Farrell | Chair |
| Shannon Zerzan | Secretary of the Board |
| Corey Braastad | Director |
| Kelly Jankowski | Director |
| Karen McRoy-Negrin | Director |
| Jamie Gibson | Chief Development Officer |
| Robert Graham | Director |
| Allsyon Henkel | Director |
| Mark Moore | Treasurer of the Board |
| Kenneth Hobby | |
| Marc Ginsky | Director |
| Brian Snyder, MD, PhD | Director |
| Marline Pagan | Chief Financial Officer / COO |
| Jaclyn Greenwood | Director |
| Joe Wiseman | Director |
| Rob Lockwood | Director |
| Tyles Dukes | Director |
About
- Legal name
- Families of Sma
- EIN
- 363320440
- Address
- 925 Busse Rd, Elk Grove VLG, IL, 60007-2400
- State
- Illinois
- Mission
- Our mission is to drive research for treatments and a cure for sma, and to support and empower everyone impacted by sma today. (as filed on the Form 990)
- Activity (NTEE)
- G110 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
- 8 (IRS master file code)
- Formed
- 1984
- Principal officer
- Kenneth Hobby (as named on the Form 990)
- IRS ruling date
- 1 February 1985
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 6, latest 2025
- IRS Publication 78
- PC (contributions deductible)
Most connected
Longest observed on the filings
≥7years on the filingsNick Farrell
≥7years on the filingsAllyson Henkel
≥7years on the filingsAmy Medina
≥7years on the filingsBradley A Nunemaker
Latest return
year to 30 June 2025iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 30 June 2025. US dollars, as filed.- Total assets
- $10.6m
- Total liabilities
- $3.2m
- Net assets or fund balances
- $7.4m
- Contributions and grants received
- $7.7m
- Program service revenue
- $6.9m
- Grants and similar paid out
- $2.6m
- Employees
- 53
- Volunteers
- 6,800
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 | $15.2m | $14m | $1.2m |
As filed on the IRS Form 990. US dollars.
Grants paid
9 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 |
|---|---|---|
| Boston Children's Hospital | Pncr network & basic research | $347k |
| Ann & Robert H Lurie Children's Hospital of Chicago | Pncr network & basic research | $307k |
| Trustees of Columbia University - NYC | Pncr network & basic research | $307k |
| Leland Stanford Junior University | Pncr network | $253k |
| University of Rochester | Pncr network | $230k |
| Children's Hospital of Philadelphia | Pncr network | $164k |
| John Hopkins University | Basic research | $150k |
| Case Western University | Basic research | $44k |
| Medical College of Wisconsin | Basic research | $915 |