EIN 94-3000301

Hydrocephalus Association (HA)

IRS 501(c) type
Num. employees
Year formed
Most recent tax filings
The Hydrocephalus Association serves as the primary nexus for research on hydrocephalus, a condition defined by an abnormal, excessive accumulation of cerebrospinal fluid (CSF) within the cavities of the brain.
Total revenues
Total expenses
Total assets
Num. employees

Program areas at HA

Researchthe Hydrocephalus Association (ha) remains dedicated to supporting high quality, high-impact research through continued support of 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 access to critical data. Hands provides the connections, technology, and tools needed to spur and support innovative basic and translational 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 linking basic, translational, and clinical researchers, ha has created a pipeline to move research from the bench to the bedside.
Advocacy the Hydrocephalus Association advocacy steering 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) administered by the department of defense (dod). The cdmrp has appropriations of $16.3 billion, which are used to fund the best scientific and medical research. We are proud of this continued accomplishment. Ha co-founded with the spina bifida Association a coalition focused on issues around 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 heath defense consortium. Ha focused efforts to launch a grassroots advocacy network to empower advocates to engage with their elected officials.
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 2022, ha staff provided one-on-one support through phone calls, emails, and interactions on social media totaling over 3,000 touches. We grew engagement in our local support groups - community networks - by over 40%. Ha conducted a total of 220 virtual social gatherings and/or educational meetings with medical and other professionals joining as guest speakers. These events provided our community with the opportunity to find friendship and receive education. Our peer support volunteers made 89 connections to provide first-hand knowledge and experience on living with Hydrocephalus. New national level groups emerged; one for individuals with Hydrocephalus in their 30s, middle school parents, and an orange county based nph group. The Association continues to support our young adults' academic pursuits through our scholarship program. Established in 1994, ha has awarded 227 scholarships to deserving future leaders of the Hydrocephalus community. In 2022, ha offered 12 educational scholarships to young adults living with Hydrocephalus who exhibit promising leadership skills and are involved in their communities.

Grants made by HA

GranteeGrant descriptionAmount
University of UtahTo Fund the Clinical Research Site for the Adult Hydrocephalus Clinical Research Network$145,474
Washington University in St. Louis (Wash. U)Mechanisms of Hydrocephalus Research Grant - To Fund Basic Research on Hydrocephalus$100,000
Primary Childrens Medical Center FoundationTo Fund the Clinical Research Site for the Hydrocephalus Clinical Research Network$100,000
...and 2 more grants made

Who funds Hydrocephalus Association (HA)

Grants from foundations and other nonprofits
Team Hydro FoundationDonation To A Domestically Registered Charitable Organization.$124,887
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$79,300
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$79,300
...and 54 more grants received totalling $760,498

Personnel at HA

Diana GrayPresident and Chief Executive Officer$216,015
Amanda GarzonChief Operating Officer$123,921
Brian SaphierChief Financial Officer$125,082
Linda RileyDirector of Fund Developme$129,220
Randi CoreyNational Director of Special Events$100,850
...and 5 more key personnel

Financials for HA

RevenuesFYE 12/2022
Total grants, contributions, etc.$4,244,362
Program services$0
Investment income and dividends$48,407
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$0
Net income from fundraising events$-193,450
Net income from gaming activities$42,309
Net income from sales of inventory$6,765
Miscellaneous revenues$150
Total revenues$4,148,543

Form 990s for HA

Fiscal year endingDate received by IRSFormPDF link
2022-122023-07-10990View PDF
2021-122022-08-29990View PDF
2020-122021-07-29990View PDF
2019-122021-01-21990View PDF
2018-122019-09-20990View PDF
...and 9 more Form 990s
Data update history
May 18, 2024
Received grants
Identified 1 new grant, including a grant for $1,000 from The Bay State Federal Savings Charitable Foundation
February 4, 2024
Received grants
Identified 7 new grant, including a grant for $75,000 from The Craig and Vicki Brown Foundation
October 23, 2023
Received grants
Identified 3 new grant, including a grant for $30,000 from Texas Children's Hospital (TCS)
August 25, 2023
Posted financials
Added Form 990 for fiscal year 2022
August 23, 2023
Updated personnel
Identified 3 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
HealthDiseases and disorders
Political advocacyConducts researchLobbyingFundraising eventsPeer-to-peer fundraisingOperates internationallyNational levelEndowed supportCommunity engagement / volunteeringProvides scholarshipsFundraising races, competitions, and tournamentsTax deductible donationsAccepts online donations
General information
4340 E W Hwy 905
Bethesda, MD 20814
Metro area
Washington-Arlington-Alexandria, DC-VA-MD-WV
Montgomery County, MD
Website URL
(888) 598-3789
Facebook page
Twitter profile
IRS details
Fiscal year end
Taxreturn type
Form 990
Year formed
Eligible to receive tax-deductible contributions (Pub 78)
NTEE code, primary
G40: Diseases of Specific Organs
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
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