Spastic Paraplegia Foundation Inc
Public records show a registered, tax-exempt organization in good standing.
What it says it does
1. To fund scientific research to discover the cures for hereditary spastic paraplegia and primary lateral sclerosis. 2. To provide information about the disorders to patients and their loved ones, and to the general public. 3. To provide emotional support to patients and their loved ones
- Income
- $1.7 million
- Spending
- $899,593
- Spent on programs
- 88%
- Reserves
- 24.4 months of spending
- Largest source of income
- donations and private grants, 92%
- Employees
- 0
- Volunteers
- 100
- Highest pay
- $38,350, treasurer
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Strong: 90 out of 100. Higher than 69% of charities in its peer group (diseases, $1m to $10m).
Reserves
35 of 35Spendable reserves would cover 24.4 months of spending.
Debt
10 of 20It owes 39% of what it owns.
Living within its means
15 of 15Income exceeded spending by 48% of income.
Income trend
15 of 15Income rose 31% on the year before.
Spending floor
15 of 1588% of spending went to programs and raising each dollar of donations cost 2 cents.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Good: 80 out of 100. Higher than 27% of charities in its peer group (diseases, $1m to $10m).
Independent board
25 of 2511 of 11 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
0 of 8Reports no written whistleblower policy.
Record keeping policy
0 of 7Reports no written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
0 of 5Reports no independent review process for its chief executive's pay.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (4)
- $617,153 spent. Scientific research grants were awarded to academic researchers in universities both in the United States and internationally. A Scientific Advisory Board reviews and ranks all grant proposals received each year. The Foundation funds only the top ranked proposals. Grants are divided into up to five installments. The first installment is issued after a countersigned Research Grant Agreement is returned to the Foundation. Each of the remaining installments are issued after a satisfactory progress report or final report from the researcher. The amount above reflects the amount of grant payments made in 2023.
- $152,645 spent. The Foundation holds an annual conference each year for individuals suffering from the disease, their families, and caregivers. Researchers speak about primary lateral sclerosis and hereditary spastic paraplegia, including updates on the current state of their research. Attendees meet others affected by the disorders, typically the first time these individuals have met others with the same condition in person. Attendees pay a registration fee to attend.
- $13,367 spent. The Foundation prints and distributes "Synapse", a periodical about the disorders, activities of the Foundation, and articles about research.
- $4,013 spent. Printing expenses to update annual report recipients of medical research status; software to facilitate advocacy of rare diseases
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated September 30, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated September 10, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since June 2002.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 7, 2026.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.