Loading organization details...
Loading organization details...
WE ARE COMMITTED TO CREATING AND LEADING A TRANSPARENT COLLABORATIVE RESEARCH PROCESS THAT INVOLVES ALS PATIENTS TODAY AND HONORS THOSE WHOSE JOURNEY WITH THIS DISEASE HAS ENDED. WE ARE GUIDED BY PASSION, LOVE AND THE SPIRIT OF ENTREPRENEURSHIP UPON WHICH WE WERE FOUNDED.
Source: IRS Form 990 (Tax Year 2024)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2024
Total Revenue
▼$13.4M
Program Spending
91%
of total expenses go to program services
Total Contributions
$11.3M
Total Expenses
▼$12.9M
Total Assets
$23.1M
Total Liabilities
▼$4.4M
Net Assets
$18.6M
Officer Compensation
→$414.9K
Other Salaries
$4.1M
Investment Income
$466K
Fundraising
▼$1.5M
Source: USAspending.gov
No federal awards found for this organization.
USAspending.gov tracks federal grants, cooperative agreements, and other financial assistance. Not all nonprofits receive federal funding.
Source: Federal Audit Clearinghouse (fac.gov)
No federal single audit records found for this organization.
Single audits are required for entities expending $750,000+ in federal awards annually.
Tax Year 2024 · Source: IRS e-Filed Form 990Schedule J available
Individuals serving as officers, directors, or trustees of the organization.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other |
|---|
Source: IRS Publication 78, Auto-Revocation List & e-Postcard Data
Tax-deductible contributions: Yes
Deductibility code: PC
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2024IRS e-File | $13.4M | $11.3M | $12.9M | $23.1M | $18.6M |
| 2023IRS e-File | $11.6M | $10M | $11.2M | $20M | $15M |
| 2022 | $11.4M | $9.8M | $9.8M | $21.1M | $15.2M |
| 2021 | $12.4M |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
| Tax Year | Form Type | Source | Documents |
|---|---|---|---|
| 2024 | 990 | IRS e-File | PDF not yet published by IRSView Filing → |
| 2023 | 990 | DataIRS e-File | |
| 2022 | 990 | DataIRS e-File |
Financial data: IRS e-Filed Form 990 (Tax Year 2024)
Leadership & compensation: IRS e-Filed Form 990, Part VII (Tax Year 2024)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Fernando Vieira | CEO And Cso | 40 | $386.9K | $0 | $28K | $414.9K |
| Lynne Nieto | Chairman | 2.5 | $0 | $0 | $0 | $0 |
| Steven Perrin Phd | Vice Chair | 2.5 | $0 | $0 | $0 | $0 |
| Theodore Reich Jd Cpa | Treasurer And Board Member | 2.5 | $0 | $0 | $0 | $0 |
Fernando Vieira
CEO And Cso
$414.9K
Hrs/Wk
40
Compensation
$386.9K
Related Orgs
$0
Other
$28K
Lynne Nieto
Chairman
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Steven Perrin Phd
Vice Chair
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Theodore Reich Jd Cpa
Treasurer And Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Highest compensated employees who are not officers or directors.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Alan Gill | VP Of Research | 40 | $189K | $0 | $19.8K | $208.7K |
| Carol Hamilton | VP Of Development | 40 | $172.6K | $0 | $14.5K | $187.1K |
| Kyle R Denton | Director, Cell Biology | 40 | $158.4K | $0 | $26.7K |
Alan Gill
VP Of Research
$208.7K
Hrs/Wk
40
Compensation
$189K
Related Orgs
$0
Other
$19.8K
Carol Hamilton
VP Of Development
$187.1K
Hrs/Wk
40
Compensation
$172.6K
Related Orgs
$0
Other
$14.5K
Kyle R Denton
Director, Cell Biology
$185.1K
Hrs/Wk
40
Compensation
$158.4K
Related Orgs
$0
Other
$26.7K
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Alexander Cappello | Board Member | 2.5 | $0 | $0 | $0 | $0 |
| Andrew Niblock | Board Member (left In Dec 2024) | 2.5 | $0 | $0 | $0 | $0 |
| Dr Spiros Jamas Scd | Board Member | 2.5 | $0 | $0 | $0 | $0 |
| Dr Stanley H Appel Md | Board Member | 2.5 | $0 | $0 | $0 | $0 |
| James Allen Heywood | Board Member | 2.5 | $0 | $0 | $0 | $0 |
| Jenny Dwyer |
Alexander Cappello
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Andrew Niblock
Board Member (left In Dec 2024)
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Dr Spiros Jamas Scd
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
| $11.4M |
| $9M |
| $19M |
| $16.5M |
| 2020 | $10.2M | $8.1M | $9.5M | $30M | $27.2M |
| 2019 | $13.1M | $11.8M | $11.5M | $17.5M | $15.1M |
| 2018 | $15M | $12.7M | $12.3M | $15.7M | $13.4M |
| 2017 | $17.2M | $14.2M | $12.5M | $13.6M | $10.7M |
| 2016 | $11.8M | $10.3M | $11.3M | $9.1M | $6M |
| 2015 | $9.4M | $7.7M | $12.7M | $8.4M | $5.4M |
| 2014 | $14.3M | $13.4M | $11.5M | $11.3M | $8.7M |
| 2013 | $8.8M | $8.1M | $9.5M | $6.7M | $5.9M |
| 2012 | $11.6M | $11M | $9.7M | $7.3M | $6.6M |
| 2011 | $8M | $6.4M | $7.7M | $5.4M | $4.7M |
| 2021 | 990 | Data |
| 2020 | 990 | Data |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | — |
| 2009 | 990 | — |
| 2008 | 990 | — |
| 2007 | 990 | — |
| 2006 | 990 | — |
| 2005 | 990 | — |
| 2004 | 990 | — |
| 2003 | 990 | — |
| $185.1K |
| Theo Hatzipetros | Director Of Pharmacology | 40 | $155.6K | $0 | $14K | $169.6K |
| Meghan Buco | Senior Director Of Marketing & Communications | 40 | $135K | $0 | $20.8K | $155.8K |
Theo Hatzipetros
Director Of Pharmacology
$169.6K
Hrs/Wk
40
Compensation
$155.6K
Related Orgs
$0
Other
$14K
Meghan Buco
Senior Director Of Marketing & Communications
$155.8K
Hrs/Wk
40
Compensation
$135K
Related Orgs
$0
Other
$20.8K
| Board Member |
| 2.5 |
| $0 |
| $0 |
| $0 |
| $0 |
| John B Heywood Phd Scd | Board Member | 2.5 | $0 | $0 | $0 | $0 |
| Julie Swan | Board Member | 2.5 | $0 | $0 | $0 | $0 |
| Kent Jackson Bransford Md | Board Member | 2.5 | $0 | $0 | $0 | $0 |
| Mike Smith | Board Member | 2.5 | $0 | $0 | $0 | $0 |
| Paul Sallaberry | Board Member | 2.5 | $0 | $0 | $0 | $0 |
| Rob Rodin | Board Member | 2.5 | $0 | $0 | $0 | $0 |
| Robert Sepucha | Board Member | 2.5 | $0 | $0 | $0 | $0 |
| Tom Engellenner | Board Member | 2.5 | $0 | $0 | $0 | $0 |
Dr Stanley H Appel Md
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
James Allen Heywood
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Jenny Dwyer
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
John B Heywood Phd Scd
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Julie Swan
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Kent Jackson Bransford Md
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Mike Smith
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Paul Sallaberry
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Rob Rodin
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Robert Sepucha
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0
Tom Engellenner
Board Member
$0
Hrs/Wk
2.5
Compensation
$0
Related Orgs
$0
Other
$0