Hydrocephalus Association Incorporated
Public records show a registered, tax-exempt organization in good standing.
What it says it does
FIND A CURE FOR HYROCEPHALUS AND IMPROVE THE LIVES OF THOSE IMPACTED. WE WILL ACCOMPLISH THIS BY COLLABORATING WITH PATIENTS, CAREGIVERS, RESEARCHERS AND INDUSTRY, RAISING AWARENESS, AND FUNDING INNOVATIVE, HIGH-IMPACT RESEARCH TO PREVENT, TREAT AND CURE HYDROCEPHALUS.
- Income
- $4.4 million
- Spending
- $3.8 million
- Spent on programs
- 84%
- Reserves
- 7.3 months of spending
- Largest source of income
- donations and private grants, 98%
- Employees
- 23
- Volunteers
- 1,500
- Highest pay
- $286,107, president and ceo
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: 89 out of 100. Higher than 65% of charities in its peer group (diseases, $1m to $10m).
Reserves
28 of 35Spendable reserves would cover 7.3 months of spending.
Debt
16 of 20It owes 21% of what it owns.
Living within its means
15 of 15Income exceeded spending by 14% of income.
Income trend
15 of 15Income rose 23% on the year before.
Spending floor
15 of 1584% of spending went to programs and raising each dollar of donations cost 2 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
Strong: 100 out of 100. Higher than 61% of charities in its peer group (diseases, $1m to $10m).
Independent board
25 of 2512 of 12 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a 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
5 of 5Sets its chief executive's pay through independent review and comparison.
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, 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)
- $1.3 million spent. RESEARCHTHE HYDROCEPHALUS ASSOCIATION (HA) IS DEDICATED TO ADVANCING HIGH-QUALITY RESEARCH. EACH YEAR THE HA FUNDS TALENTED RESEARCHERS THROUGH DIRECT GRANT FUNDING ENABLING THEM TO LEVERAGE THESE PROJECTS AND SECURE LARGER FEDERAL GRANTS FOR GREATER IMPACT. THE HA FUNDS RESEARCH THAT IS ALIGNED WITH PATIENT-IDENTIFIED PRIORITIES TO IMPROVE UNDERSTANDING OF THE CONDITION, IDENTIFY AND TEST NEW TREATMENTS, MOVE DISCOVERIES TOWARDS CLINICAL USE, ENHANCE DIAGNOSIS, IMPROVE ACCESS TO CARE, AND ULTIMATELY ELEVATE THE QUALITY OF LIFE OF THOSE LIVING WITH HYDROCEPHALUS. GRANT PROGRAMS INCLUDE THE INNOVATOR AWARD, ACCELERATOR AWARD, NEUROPSYCHOLOGY AND COGNITION AWARD, ENGINEERING PRIZE, RESIDENTS PRIZE, AND THE NEXT GENERATION AWARD. HA'S IMPACT IS AMPLIFIED THROUGH THE MANY RESEARCH NETWORKS THAT WE SUPPORT: THE HA PATIENT-POWERED INTERACTIVE ENGAGEMENT REGISTRY (HAPPIER), HA NETWORK FOR DISCOVERY SCIENCE (HANDS), HYDROCEPHALUS CLINICAL RESEARCH NETWORK (HCRN), AND ADULT HCRN (AHCRN). HAPPIER PROVIDES PATIENTS AND CAREGIVERS THE OPPORTUNITY TO ENGAGE IN RESEARCH WHILE PROVIDING RESEARCHERS WITH ACCESS TO CRITICAL DATA. HANDS PROVIDES THE CONNECTIONS, TECHNOLOGY, AND TOOLS NEEDED TO SPUR AND SUPPORT INNOVATIVE RESEARCH, WHILE THE PEDIATRIC-FOCUSED HCRN AND ADULT- FOCUSED AHCRN PROVIDE THE STRUCTURE AND EXPERTISE NECESSARY TO EFFICIENTLY AND THOROUGHLY TEST THESE NEW TECHNOLOGIES AND CLINICAL THERAPIES WITH THE HIGHEST CLINICAL STANDARDS. BY FUNDING BASIC, TRANSLATIONAL, AND CLINICAL RESEARCHERS, HA HAS CREATED A PIPELINE TO MOVE RESEARCH FROM THE BENCH TO THE BEDSIDE.
- $1.6 million spent. SUPPORT AND EDUCATION THE HYDROCEPHALUS ASSOCIATION IS DEEPLY COMMITTED TO IMPROVING THE LIVES OF THOSE AFFECTED BY HYDROCEPHALUS BY PROVIDING DIRECT SUPPORT AS WELL AS EDUCATIONAL RESOURCES IN COLLABORATION WITH A WIDE RANGE OF STAKEHOLDERS TO RAISE AWARENESS AND KNOWLEDGE. IN 2024, HA STAFF PROVIDED ONE-ON-ONE SUPPORT THROUGH PHONE CALLS, EMAILS, AND INTERACTIONS ON SOCIAL MEDIA TOTALING OVER 3,744 TOUCHES. HA CONDUCTED A TOTAL OF 216 VIRTUAL SOCIAL GATHERINGS AND/OR EDUCATIONAL MEETINGS WITH MEDICAL AND OTHER PROFESSIONALS JOINING AS GUEST SPEAKERS IN OUR LOCAL SUPPORT GROUPS - COMMUNITY NETWORKS. THESE EVENTS PROVIDED OUR COMMUNITY WITH THE OPPORTUNITY TO FIND FRIENDSHIP AND RECEIVE EDUCATION. OUR PEER SUPPORT VOLUNTEERS MADE 65 CONNECTIONS TO PROVIDE FIRST-HAND KNOWLEDGE AND EXPERIENCE ON LIVING WITH HYDROCEPHALUS.THE ASSOCIATION PROMOTES FREE USAGE OF OUR HYDROASSIST MOBILE APP, TO INCLUDE SELF-REPORTED HEALTH INFORMATION AND SYMPTOM LOGS TO ENABLE PATIENTS TO HAVE ACCESS TO THIS INFORMATION AT THEIR FINGERTIPS.THE ASSOCIATION CONTINUES TO SUPPORT OUR YOUNG ADULTS' ACADEMIC PURSUITS THROUGH OUR SCHOLARSHIP PROGRAM. ESTABLISHED IN 1994, HA HAS AWARDED 265 SCHOLARSHIPS TO DESERVING FUTURE LEADERS OF THE HYDROCEPHALUS COMMUNITY. IN 2025, HA OFFERED 13 EDUCATIONAL SCHOLARSHIPS TO YOUNG ADULTS LIVING WITH HYDROCEPHALUS WHO EXHIBIT PROMISING LEADERSHIP SKILLS AND ARE INVOLVED IN THEIR COMMUNITIES.
- $133,949 spent. ADVOCACY THE HYDROCEPHALUS ASSOCIATION ADVOCACY COMMITTEE HAS CONTINUED TO MONITOR AND SUPPORT KEY LEGISLATION THAT WILL BENEFIT THE HYDROCEPHALUS COMMUNITY. HYDROCEPHALUS WAS ONCE AGAIN INCLUDED ON THE LIST OF ELIGIBLE CONDITIONS TO RECEIVE FUNDING UNDER THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS (CDMRP) AND ADMINISTERED BY THE DEPARTMENT OF DEFENSE (DOD). THE CDMRP HAS APPROPRIATIONS OF $1.27 BILLION, WHICH ARE USED TO FUND THE BEST SCIENTIFIC AND MEDICAL RESEARCH. WE ARE PROUD OF THIS CONTINUED ACCOMPLISHMENT. HA CO-LEADS THE AMERICAN ASSOCIATION OF NEUROLOGICAL SURGEONS NONPROFIT ADVISORY COUNCIL FOCUSED ON DEVELOPING IMPROVED HEALTHCARE MODELS FOR CHILDREN WITH CHRONIC MEDICAL CONDITIONS TRANSITIONING TO ADULT MEDICAL CARE AND SERVICES. HA ALSO CONTINUES TO BE ACTIVE IN ADVOCACY MEETINGS AND SIGN-ON LETTERS PUT TOGETHER AS PART OF THE NATIONAL HEALTH COUNCIL (NHC), AMERICAN BRAIN COALITION (ABC), NATIONAL ORGANIZATION FOR RARE DISEASE (NORD), RESEARCH!AMERICA, AND THE NATIONAL DEFENSE HEALTH RESEARCH CONSORTIUM (DHRC).
- $113,811 spent. CONFERENCES
- MERCHANDISE SALES, NET
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 November 6, 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 May 1991.
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 November 4, 2026.
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