Project Alive
Public records show a registered, tax-exempt organization in good standing.
What it says it does
PROJECT ALIVE EXISTS TO FIND A CURE FOR HUNTER SYNDROME THROUGH RESEARCH AND ADVOCACY, AND PROVIDE EDUCATION AND RESOURCES TO THE HUNTER SYNDROME COMMUNITY.
- Income
- $468,046
- Spending
- $849,174
- Spent on programs
- 77%
- Reserves
- 21.1 months of spending
- Largest source of income
- donations and private grants, 89%
- Employees
- 5
- Volunteers
- 10
- Highest pay
- $86,240, president
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Good: 85 out of 100. Higher than 50% of charities in its peer group (philanthropy, $250k to $1m).
Reserves
35 of 35Spendable reserves would cover 21.1 months of spending.
Debt
20 of 20It owes 10% of what it owns.
Living within its means
0 of 15Spending exceeded income by 81% of income.
Income trend
15 of 15Income rose 15% on the year before.
Spending floor
15 of 1577% of spending went to programs and raising each dollar of donations cost 22 cents.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Good: 72 out of 100. Higher than 47% of charities in its peer group (philanthropy, $250k to $1m).
Independent board
25 of 2514 of 14 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
0 of 10Did not give the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
12 of 15Its accounts were reviewed or compiled by an independent accountant, but not audited.
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, 2025, 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 (5)
- $71,856 spent. RESEARCH GRANTS - PROVIDES FUNDING TO SUPPORT RESEARCH IN THE HUNTER SYNDROME SPACE THAT FILLS CRITICAL GAPS IN CURRENT KNOWLEDGE ACROSS BASIC SCIENCE, CRITICAL CARE AND TRANSLATIONAL THERAPEUTICS TO IMPROVE THE LIVES OF THOSE AFFECTED WITH HUNTER SYNDROME AND THEIR FAMILIES.
- $90,935 spent. FAMILY CASE MANAGEMENT - RECEIVES COMMUNITY ENROLLMENT FORMS FROM FAMILIES, MAKES CONTACT WITH THE ENROLLED FAMILY TO DISCUSS PROGRAMS OFFERED BY PROJECT ALIVE AND ASSISTS IN FINDING NEEDED RESOURCES, I.E.-CLINICAL TRIAL INFORMATION, LOCAL SUPPORT SERVICES, PHYSICIAN INFORMATION, ETC. THIS INCLUDES HUNTER HEALTH PROGRAM.
- $454,877 spent. "N PERSON - THE YEARLY FAMILY FAIR BRINGS MPS II FAMILIES, THE MEDICALCOMMUNITY, EDUCATORS, AND INDUSTRY TOGETHER TO ATTEND SESSIONS ONSUBJECTS IMPORTANT TO THE COMMUNITY. FAMILIES HAVE THE OPPORTUNITY TO TALK WITH INDUSTRY PARTNERS, OTHER SUPPORT ORGANIZATIONS, AND MEET OTHER FAMILIES WHO ARE AFFECTED BY MPS II. HOSTED A MARKET INSIGHTS ROUNDTABLE TO DISCUSS WITH INSURANCE PAYORS THE NEED FOR THEM TO BE PROACTIVE IN HOW THEY WILL HANDLE COVERAGE OF NEWLY FDA APPROVED TREATMENTS FOR MPS II PATIENTS.
- $4,609 spent. HELPING HANDS PROGRAM - THIS PROGRAM IS TO RECOGNIZE FAMILIES THAT ARE DEALING WITH A MAJOR MEDICAL CRISIS WITH THEIR CHILD OR SUPPORT FOR THE DEATH OF A CHILD. PROJECT ALIVE WILL SEND A $50-$100 GIFT CARD FOR FOOD OR GAS TO PROVIDE SMALL RELIEF FOR THIS TIME. WE ALSO SEND FLOWERS FROM THE BOARD TO FUNERALS TO HONOR THE CHILD.
- $30,773 spent. ALL OTHER - ADVOCACY
Source: Form 990 for the year ending December 31, 2025, 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 October 13, 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 October 13, 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 October 13, 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 October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since February 2015.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 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 21, 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.