Civic Intelligence

Hydrocephalus Association Incorporated

990 • Fiscal year 2014 • EIN 94-3000301

Jan 01, 2014 to Dec 31, 2014 • Filed on Nov 13, 2015

4340 East West Highway No 905Bethesda, MD 20814

(301) 202-3811

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

50th percentile

0.11x

Higher debt load relative to assets than 50% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2014

Liabilities / Revenue

50th percentile

0.11x

Higher debt load relative to revenue than 50% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2014

Net Margin

71st percentile

12%

Higher net margin than 71% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2014

Top Officer Pay

91st percentile

$221,405

Higher top officer pay than 91% of similar nonprofits.

Top officer pay equals 7.0% of source-year revenue.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2014

Asset Growth

79th percentile

16%

Faster asset growth than 79% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2013 to 2014

Revenue Growth

23rd percentile

-8.5%

Faster revenue growth than 23% of similar nonprofits.

2014 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2013 to 2014

Assets

Up

$3,224,755

Up $453,696 (+16%) from 2013

Net Assets

Up

$2,875,342

Up $379,124 (+15%) from 2013

Liabilities

Up

$349,413

Up $74,572 (+27%) from 2013

Revenue

Down

$3,166,575

Down $294,861 (-8.5%) from 2013

Expenses

Up

$2,779,006

Up $361,468 (+15%) from 2013

Net Income

Down

$387,569

Down $656,329 (-63%) from 2013

Historical Trend

Balance Sheet Trend

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$6.0M$4.0M$2.0M$0Assets 2010: $1,675,677Liabilities 2010: $400,956Net Assets 2010: $1,274,7212010Assets 2011: $1,215,491Liabilities 2011: $143,095Net Assets 2011: $1,072,3962011Assets 2012: $1,652,061Liabilities 2012: $194,607Net Assets 2012: $1,457,4542012Assets 2013: $2,771,059Liabilities 2013: $274,841Net Assets 2013: $2,496,2182013Assets 2014: $3,224,755Liabilities 2014: $349,413Net Assets 2014: $2,875,3422014Assets 2015: $3,017,833Liabilities 2015: $69,668Net Assets 2015: $2,948,1652015Assets 2016: $4,082,568Liabilities 2016: $436,998Net Assets 2016: $3,645,5702016Assets 2017: $3,179,190Liabilities 2017: $425,582Net Assets 2017: $2,753,6082017Assets 2018: $3,033,090Liabilities 2018: $617,168Net Assets 2018: $2,415,9222018Assets 2019: $2,356,079Liabilities 2019: $384,999Net Assets 2019: $1,971,0802019Assets 2020: $2,750,883Liabilities 2020: $666,296Net Assets 2020: $2,084,5872020Assets 2021: $3,795,524Liabilities 2021: $542,795Net Assets 2021: $3,252,7292021Assets 2022: $4,516,368Liabilities 2022: $852,119Net Assets 2022: $3,664,2492022Assets 2023: $4,359,202Liabilities 2023: $612,422Net Assets 2023: $3,746,7802023Assets 2024: $3,458,025Liabilities 2024: $488,203Net Assets 2024: $2,969,8222024

Highlighted filing

2014

Assets$3,224,755
Liabilities$349,413
Net Assets$2,875,342

Operations Trend

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$6.0M$4.0M$2.0M$0-$2.0MRevenue 2010: $1,867,992Expenses 2010: $1,972,440Net Income 2010: -$104,4482010Revenue 2011: $1,603,636Expenses 2011: $1,805,015Net Income 2011: -$201,3792011Expenses 2012: $1,838,5022012Revenue 2013: $3,461,436Expenses 2013: $2,417,538Net Income 2013: $1,043,8982013Revenue 2014: $3,166,575Expenses 2014: $2,779,006Net Income 2014: $387,5692014Revenue 2015: $3,357,377Expenses 2015: $3,279,047Net Income 2015: $78,3302015Revenue 2016: $4,695,627Expenses 2016: $3,980,661Net Income 2016: $714,9662016Revenue 2017: $3,864,095Expenses 2017: $4,756,366Net Income 2017: -$892,2712017Revenue 2018: $4,569,449Expenses 2018: $4,901,982Net Income 2018: -$332,5332018Revenue 2019: $3,409,455Expenses 2019: $3,857,581Net Income 2019: -$448,1262019Revenue 2020: $3,247,779Expenses 2020: $3,139,397Net Income 2020: $108,3822020Revenue 2021: $3,909,969Expenses 2021: $2,745,199Net Income 2021: $1,164,7702021Revenue 2022: $4,148,543Expenses 2022: $3,617,494Net Income 2022: $531,0492022Revenue 2023: $3,628,383Expenses 2023: $3,629,656Net Income 2023: -$1,2732023Revenue 2024: $3,558,664Expenses 2024: $4,411,991Net Income 2024: -$853,3272024

Highlighted filing

2014

Revenue$3,166,575
Expenses$2,779,006
Net Income$387,569
Jump To
Filing Snapshot
Filing Period
Jan 1, 2014 to Dec 31, 2014
Signed
Nov 13, 2015
Return Version
2014v5.0
Gross Receipts
$3,594,437
Mission and Program Overview

Mission

Find a cure for hydrocephalus 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.

The hydrocephalus association collaborates with patients, caregivers, researchers and industry to raise awareness and fund innovative high impact research to prevent, treat, and ultimately cure hydrocephalus.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$1,952,896$2,357,827▲ $404,931
Pledges and Grants Receivable$403,717$454,988▲ $51,271
Investments in Publicly Traded Securities$303,498$317,480▲ $13,982
Prepaid Expenses and Deferred Charges$50,769$34,441▼ $16,328
Land, Buildings, and Equipment, Net$39,528$34,384▼ $5,144
Inventories for Sale or Use$9,151$5,307▼ $3,844
Accounts Receivable$392--
Total Assets$2,771,059$3,224,755▲ $453,696
Other Assets Total$11,108$20,328▲ $9,220
Liabilities
Accounts Payable and Accrued Expenses$264,412$349,413▲ $85,001
Other Liabilities$10,429$0▼ $10,429
Total Liabilities$274,841$349,413▲ $74,572
Net Assets / Fund Balance
Unrestricted Net Assets$1,840,302$2,269,865▲ $429,563
Temporarily Rstr Net Assets$574,798$524,359▼ $50,439
Permanently Rstr Net Assets$81,118$81,118→ $0
Total Net Assets Fund Balance$2,496,218$2,875,342▲ $379,124
Total Liabilities and Net Assets / Fund Balance$2,771,059$3,224,755▲ $453,696

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$34,384$49,322$83,706

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2014$81,118-▲ $628-$81,118
2013$81,118-▲ $105-$81,118
2012$80,818$300▲ $4,731-$81,118
2011$80,718$100▲ $1,386-$80,818
2010$80,218$500▲ $3,895-$80,718
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Dawn MancusoCEOFT$197,750$23,655$221,405

Board Members and Trustees

NameTitle
BARRETT O'CONNERChair
Paul GrossSecretary/past Chair
Craig BrownSenior Vice Chairman
Aseem ChandraVice Chair
David BrowdyVice Chair
Debby BuffaDirector
John KestleDirector
John LawrenceDirector
Marion WalkerDirector
Marvin SussmanDirector
Michael a Williams MdDirector
Mike SchwabDirector
Ralph KistlerDirector
Russell FudgeDirector
Rick SmithTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$3,366,289
Program Service Revenue
$54,031
Investment Income
$10,392
Other Revenue
$-264,137
All Other Contributions
$1,873,689
Change in Net Assets
$387,569

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
Yes
Third parties used for noncash contributions
No

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Securities Publicly Traded5$125,856Fair Market Value
Other Non Cash Contri Table2$3,290Fair Market Value
Total Noncash Contributions7$129,146-

Audited Revenue Reconciliation

Revenue per Audited Statements
$3,166,575
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$-8,445
Total Revenue per Audited Statements
$3,158,130
Total Revenue per Form 990
$3,166,575
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$1,082,979
Salaries, Compensation, and Employee Benefits$1,020,938
Grants and Similar Amounts Paid$675,089
Total Fundraising Expense$604,042
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$647,024--$647,024
Other Salaries and Wages$307,234$53,609$278,580$639,423
Office Expenses$194,361$33,666$77,503$305,530
Current Officers, Directors, Trustees, and Key Employees$98,908$87,594$34,903$221,405
Travel$151,616$43,093$23,286$217,995
Fees for Services Other$86,839$10,023$20,262$117,124
Occupancy$67,336$16,854$22,571$106,761
Other Employee Benefits$45,114$15,068$31,856$92,038
Payroll Taxes$27,810$9,383$22,307$59,500
Information Technology$27,066$12,493$11,637$51,196
Fees for Services Accounting-$49,066-$49,066
Grants to Domestic Individuals$28,065--$28,065
All Other Expenses$9,571$2,620$10,828$23,019
Depreciation Depletion$10,676$2,808$3,758$17,242
Other Expenses$8,785$1,790$555$11,130
Insurance$5,068$3,081$1,391$9,540
Pension Plan Contributions$3,098-$5,474$8,572
Conferences and Meetings$3,564-$565$4,129
Advertising$1,184$116$44$1,344
Interest-$1,186-$1,186
Total Functional Expenses$1,823,424$351,540$604,042$2,779,006

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$2,779,006
Total Expenses per Audited Statements$2,779,006
Total Expenses per Form 990$2,779,006
Expenses Not Reported on Financial Statements$0
Expenses Not Reported on Form 990$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
PRIMARY CHILDREN'S MEDICAL CENTERSalt Lake City, UT501(c)(3)To Fund Hydrocephalus Research Conducted at the Hydrocephalus Clinical Research Network.$448,703
SEATTLE CHILDREN'S HOSPITALSeattle, WA501(c)(3)Funding Hydrocephalus Research Conducted at the Institution$31,458
Weill Cornell Medical CollegeNew York, NY501(c)(3)To Fund the Establishment of a Clinical Research Site for the Adult Hydrocephalus Clinical Research Network.$18,747
Cleveland Clinic FoundationCleveland, OH501(c)(3)TO FUND THE ESTABLISHMENT OF A CLINICAL RESEARCH SITE FOR THE ADULT HYDROCEPHALUS CLINICAL RESEARCH NETWORK."$16,806
Washington UniversitySaint Louis, MO501(c)(3)To Fund an Investigator-led Research Study.$13,036
American Association of Neurological SurgeonsMeadows, IL501(c)(3)To Fund the Publication of Best Practice Guidelines on the Treatment of Hydrocephalus.$10,000

International Summary

Offices
0
Employees
0
Spending
$16,528

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
North AmericaGrant to Recipient---$16,028
Sub-saharan AfricaGrant to Recipient---$500
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
Yes
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$313,543
Gaming Gross Income$31,522
Fundraising Gross Income$0
Gaming Direct Expenses$0
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Walk-a-thon (los Angeles)$121,950-$8,566-
Walk-a-thon (chicago)$109,015-$20,465-
Total Events$1,492,600-$313,543$-313,543
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
Yes
Annual disclosure for covered persons
Yes
Audit committee
Yes
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 1

According to our bylaws, the executive committee, unless limited in a resolution of the baord, shall have and may exercise all of the authority of the board in the management of the business and affairs of the corporation between meetings of the board. The executive committee is composed of 1) barrett o'connor, chairman 2) craig brown, senior vice chairman 3) david browdy, vice chair 4) aseem chandra, vice chair 5) rick smith, treasurer 6) paul gross, secretary/past chair. Every executive committee member is on the governing board.

Form 990, Part VI, Section B, Line 11

All board members receive an electronic or paper copy of the irs form 990 prior to its submission. Board members must submit any questions or changes to the chief executive officer, who submits the changes to the tax preparer.

Form 990, Part VI, Section B, Line 12C

Each year board members get a copy of the conflict of interest policy and a disclosure form to fill out with details of ant any possible conflicts that may exist. Conflicts are reviewed at each board meeting.

Form 990, Part VI, Section B, Line 15A

The process for determining the compensation for the chief executive officer (who is also in charge of financial management of the organization) position includes the following steps: 1) the board chair and chief executive officer each collect comparable salary information (e.g., salary studies). 2) the salary comparison information is forwarded to the treasurer who documents findings from the data collected. 3) the treasurer makes a recommendation for ceo compensation to the full board. 4) board members (without a conflict of interest) vote on the recommendation by the treasurer for proposed ceo compensation, and a record of the vote is recorded in board minutes. Other salaries of senior managers are benchmarked using current salary survey data; our goal is to provide the median salary provided by similar organizations. This process is followed on a periodic basis for the ceo, based on contract renewal dates.

Form 990, Part VI, Section C, Line 19

The organization's governing documents, conflict of interest policy, and financial statements are available to the public at the oraganization's office upon request.

Filing and Contact Details

Filer

Filer Name
Hydrocephalus Association
EIN
94-3000301
Phone
3012023811
Address
4340 EAST WEST HIGHWAY NO 905, BETHESDA, MD 20814

Signing Officer

Name
Paul Gross
Title
Interim CEO
Phone
3012023811
Signed
2015-11-13
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Paul Gross
Formed
1986
Legal Domicile
CA
Voting Board Members
15
Independent Board Members
15
Employees
16
Volunteers
1,200

Preparer

Firm
Dzh Phillips Llp
Address
1330 BROADWAY SUITE 630, OAKLAND, CA 94612
Preparer
Hydeh Ghaffari
Phone
5108346542
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 24E

Miscellaneous expense: program service expenses 4,675. Management and general expenses 137. Fundraising expenses 3,667. Total expenses 8,479. Employee education: program service expenses 3,349. Management and general expenses 2,203. Fundraising expenses 1,883. Total expenses 7,435. Prize/award: program service expenses 1,547. Management and general expenses 280. Fundraising expenses 5,278. Total expenses 7,105.

FORM 990, PART XII, LINE 2C:

The audit committee selects and oversees an independent accounting firm to conduct the audit. No change in the selction method occurred this year.

Financial Statement Notes

PART V, LINE 4:

The organization uses endowment funds for educational scholarships to young adults with hydrocephalus.

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IRS990/ActivityOrMissionDesc0THE HYDROCEPHALUS ASSOCIATION COLLABORATES WITH PATIENTS, CAREGIVERS, RESEARCHERS AND INDUSTRY TO RAISE AWARENESS AND FUND INNOVATIVE HIGH IMPACT RESEARCH TO PREVENT, TREAT, AND ULTIMATELY CURE HYDROCEPHALUS.
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IRS990/Desc0THIS YEAR (2014) THE HYDROCEPHALUS ASSOCIATION (HA) RESEARCH DEPARTMENT FOCUSED ON BUILDING AND SUPPORTING TWO CLINICAL NETWORKS AND DEVELOPING A STRONG FIVE YEAR PLAN.IN APRIL, HA SPONSORED THE BIOMARKERS IN HYDROCEPHALUS WORKSHOP HELD IN ST. LOUIS, MO. THE WORKSHOP BROUGHT TOGETHER OVER 30 OF THE WORLD'S LEADING EXPERTS IN BIOMARKERS. THE SCIENTISTS IN ATTENDANCE SHARED THEIR LATEST RESEARCH FINDINGS IN ALL POPULATIONS OF HYDROCEPHALUS PATIENTS - PEDIATRIC, TRANSITIONAL AND NPH - AND THEIR LATEST THINKING ON WHERE THE NEXT INQUIRY IS MOST LIKELY TO REAP NEW KNOWLEDGE. IN ADDITION, THEY DISCUSSED WHAT KINDS OF SUPPORT (ORGANIZATIONAL AND FINANCIAL) COULD HELP THEM OVERCOME OBSTACLES FACED IN THIS LINE OF RESEARCH. IN EARLY OCTOBER, THE ADULT HYDROCEPHALUS CLINICAL RESEARCH NETWORK (AHCRN) OFFICIALLY LAUNCHED AFTER A MEETING IN SALT LAKE CITY, UT. ITS INITIAL FOCUS IS ON A CORE DATA PROJECT THAT WILL COLLECT PATIENT DEMOGRAPHICS, HYDROCEPHALUS CAUSE, DIAGNOSIS INFORMATION, SURGICAL AND MEDICAL MANAGEMENT INFORMATION, IMAGES, AND CEREBROSPINAL FLUID (CSF) SAMPLES FOR BIOBANKING. THIS INITIAL DATA WILL BE USED TO UNDERSTAND THE VARIABILITY, PROGRESSION, AND CURRENT TREATMENT PRACTICES FOR HYDROCEPHALUS IN ADULTS AND INFORM THE DEVELOPMENT OF HYPOTHESIS-DRIVEN RESEARCH. THE HYDROCEPHALUS CLINICAL RESEARCH NETWORK (HCRN) HAS CONTINUED THEIR PEDIATRIC FOCUSED WORK RESULTING IN MANY PRESENTATIONS AT SCIENTIFIC CONFERENCES AND THE PUBLICATION OF THREE RESEARCH PAPERS. IN ADDITION, IN LATE OCTOBER, THE PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE (PCORI) ANNOUNCED THE AWARD OF A $2.5 MILLION GRANT IN SUPPORT OF A HCRN PROPOSED RANDOMIZED CONTROL TRIAL TO DETERMINE THE MOST EFFECTIVE ENTRY SITE FOR PLACING A SHUNT. HA PARTNERED WITH HCRN TO INVOLVE PATIENTS AND CAREGIVERS IN THE STUDY SELECTION AND DEVELOPMENT AND WILL CONTINUE TO BE INVOLVED THROUGHOUT THE STUDY. THE STUDY, A RANDOMIZED CONTROLLED TRIAL OF ANTERIOR VERSUS POSTERIOR ENTRY SITE FOR CEREBROSPINAL FLUID SHUNT INSERTION, IS A FOUR-YEAR RANDOMIZED CONTROL TRIAL WITH THE GOAL TO DETERMINE WHICH ENTRY POINT DECREASES THE NEED FOR REPEATED BRAIN SURGERIES DUE TO DEVICE FAILURE. THE STUDY WILL LOOK AT ENTRY POINTS IN BOTH THE ANTERIOR (FRONT/TOP) AND POSTERIOR (BACK) AREAS OF THE BRAIN. DR. WILLIAM WHITEHEAD OF TEXAS CHILDREN'S HOSPITAL AND BAYLOR COLLEGE OF MEDICINE, A PRINCIPAL INVESTIGATOR FOR HCRN, DEVELOPED AND WILL OVERSEE THE TRIAL WHICH WILL ACCRUE PATIENTS AT ALL NINE HCRN-PARTICIPATING PEDIATRIC HOSPITALS.THE SECOND INSTALLMENT ($133,000) OF DR. TIMOTHY VOGEL'S CSF GRANT, ROLE OF NEURAL PROGENITOR CELLS IN THE DEVELOPMENT OF NEONATAL HYDROCEPHALUS, WAS RECEIVED BY CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER. DR. VOGEL IS EXPLORING HOW DEFECTS IN CILIA MOTILITY CONTRIBUTE TO THE DEVELOPMENT OF NEONATAL HYDROCEPHALUS. THE GRANT IS FOR $400,000 OVER 3 YEARS.ON NOVEMBER 1ST, THE SYSTEMATIC REVIEW "PEDIATRIC HYDROCEPHALUS: SYSTEMATIC LITERATURE REVIEW AND EVIDENCE-BASED GUIDELINES," WAS PUBLISHED IN A SUPPLEMENTAL ISSUE OF THE JOURNAL OF NEUROSURGERY: PEDIATRICS. THE REPORT PROVIDES AN IN-DEPTH ANALYSIS OF CURRENT HYDROCEPHALUS TREATMENT PRACTICES AND THE LEVEL OF EVIDENCE SUPPORTING EACH IN A SERIES OF EIGHT ARTICLES. HA WAS INTEGRAL IN BOTH DEVELOPING AND PUBLISHING THE GUIDELINES. ON DECEMBER 19, PRESIDENT OBAMA SIGNED INTO LAW H.R. 83, THE OMNIBUS AND CONTINUING RESOLUTION APPROPRIATIONS ACT OF 2015, WHICH FOR THE FIRST TIME, MADE HYDROCEPHALUS A CONDITION ELIGIBLE TO RECEIVE FUNDING THROUGH THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS (CDMRP) ADMINISTERED BY THE DEPARTMENT OF DEFENSE IN 2015. THE CDMRP HAS APPROPRIATIONS OF OVER $247 MILLION, WHICH ARE USED TO FUND THE BEST SCIENTIFIC AND MEDICAL RESEARCH AIMED AT PREVENTING, CONTROLLING, AND CURING DISEASE.
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IRS990/MissionDesc0THE MISSION OF THE HYDROCEPHALUS ASSOCIATION IS TO PROMOTE A CURE FOR HYDROCEPHALUS AND IMPROVE THE LIVES OF THOSE AFFECTED BY THE CONDITION.
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IRS990/PrincipalOfficerNm0PAUL GROSS
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IRS990/ProgSrvcAccomActy2Grp/Desc0THE HYDROCEPHALUS ASSOCIATION IS COMMITTED TO PROVIDING INNOVATIVE PROGRAMS TO MEET THE DIVERSE NEEDS OF PATIENTS AND THEIR CAREGIVERS. OUR SERVICES ENSURE THAT PATIENTS BATTLING HYDROCEPHALUS HAVE A PLACE TO TURN TO FOR RESOURCES AND PEER-TO-PEER SUPPORT. IN 2014, WE PUBLISHED SEVERAL NEW EDUCATIONAL MATERIALS, PROVIDED THOUSANDS OF HOURS OF ONE-ON-ONE SUPPORT THROUGH PHONE, MAIL, EMAIL, AND SOCIAL MEDIA TO HELP PATIENTS AND THEIR FAMILIES, AND EXPANDED OUR REACH BY RESTRUCTURING THE HYDROCEPHALUS COMMUNITY NETWORKS. WE CONTINUED OUR SUPPORT AND EDUCATION WEBINAR SERIES, DESIGNED TO DELIVER VITAL INFORMATION TO OUR COMMUNITY WHERE THEY LIVE AND WORK. THESE INTERACTIVE, FREE SESSIONS FEATURE PRESENTATIONS FROM MEDICAL PROFESSIONALS, RESEARCHERS, AND OTHER EXPERTS WORKING IN THE FIELD OF HYDROCEPHALUS. IN 2014, THE HYDROCEPHALUS ASSOCIATION (HA) HOSTED FIVE WEBINARS, WHICH INCLUDED THREE WEBINARS THAT WERE OPEN TO THE PUBLIC AND TWO PRIVATE TRAININGS. ON MONDAY, MARCH 3, DR. JOHN KESTLE, DR. MARK HAMILTON, AND PAST HA BOARD CHAIRMAN, PAUL GROSS, PRESENTED "RESEARCH UPDATE: DELIVERING ON A PROMISE." THIS RESEARCH WEBINAR INCLUDED UPDATES ON THE CURRENT WORK OF THE HYDROCEPHALUS CLINICAL RESEARCH NETWORK (HCRN), THE FORMATION OF THE ADULT HYDROCEPHALUS CLINICAL RESEARCH NETWORK (AHCRN) AND OTHER HA FUNDED RESEARCH. ON MONDAY, SEPTEMBER 15, HA CEO DAWN MANCUSO AND SHAWN DAUGHERTY PRESENTED, "PREPARING FOR RALLY DAY, HYDROCEPHALUS TALKING POINTS," A PRIVATE ADVOCACY TRAINING WEBINAR TO PREPARE INDIVIDUALS FOR THEIR CONGRESSIONAL OFFICE VISITS AT THE RALLY FOR MEDICAL RESEARCH DAY. ON WEDNESDAY, OCTOBER 22, DR. ANDREW ZABEL, KARA CASEY KREMER, AND AMANDA GARZON PRESENTED "DEVELOPING AN EFFECTIVE IEP." THIS WEBINAR PROVIDED ATTENDEES WITH AN OVERVIEW OF THE IEP PROCESS AS IT APPLIES TO YOUTH WITH HISTORIES OF HYDROCEPHALUS. ON TUESDAY, DECEMBER 9, HA STAFF HELD A COMMUNITY NETWORK CHAIR TRAINING. THIS IS THE FIRST IN A SERIES OF TRAINING WEBINARS FOR HA COMMUNITY NETWORK CHAIRS. THIS WEBINAR PROVIDED AN OVERVIEW OF COMMUNITY NETWORKS, THE ROLE OF THE CHAIR, PREPARING FOR A MEETING AND LEADING AND FACILITATING A MEETING OR EVENT. THE LAST WEBINAR, "HOPE IN PROGRESS: RESEARCH UPDATE", WAS HELD ON THURSDAY, DECEMBER 11. IN THIS WEBINAR, DR. TIMOTHY VOGEL, DR. JAMES P. MCALLISTER, DR. NORMAN RELKIN, AND PAST HA BOARD CHAIRMAN, PAUL GROSS, SHOWCASED SEVERAL EXCITING STUDIES BEING CONDUCTED AND EXPLAINED HOW BASIC, TRANSLATION, AND CLINICAL RESEARCH CAN ALL IMPACT THE MANAGEMENT AND TREATMENT OF HYDROCEPHALUS . THE PRESENTATION ALSO INCLUDED AN UPDATE ON THE NEWLY LAUNCHED ADULT HYDROCEPHALUS CLINICAL RESEARCH NETWORK (AHCRN).IN 2014, OUR COMMUNITY NETWORKS CONTINUED TO GROW AND DEVELOP BOTH ONLINE THROUGH CLOSED FACEBOOK GROUPS AND WITH GROUPS MEETING LOCALLY. THE NETWORKS PROVIDE LOCALIZED SUPPORT, EDUCATION AND EMPOWERMENT BY HOSTING EDUCATIONAL EVENTS, SUPPORT GROUP MEETINGS, ADVOCACY ACTIVITIES AND OTHER GATHERINGS THAT ENABLE INDIVIDUALS AND FAMILIES TO THRIVE. THEY CONSIST OF OVER 42 NETWORKS, WHICH HELD 81 EVENTS INVOLVING NEARLY 1,500 PARTICIPANTS. IN ADDITION, WE HAVE 23 ACTIVE VIRTUAL NETWORKS WITH ONLINE FACEBOOK GROUPS CONSISTING OF MORE THAN 2,500 MEMBERS. THESE CLOSED GROUPS ALLOW THOSE LIVING WITH HYDROCEPHALUS, AND THEIR LOVED ONES, TO CONNECT AND SHARE IN A PRIVATE FORUM IN THEIR OWN REGION AS WELL AS THROUGHOUT THE WORLD. EACH YEAR THE HYDROCEPHALUS ASSOCIATION PRESENTS A RESIDENT'S PRIZE AWARD TO ENCOURAGE YOUNG DOCTORS TO FOCUS THEIR RESEARCH EFFORTS ON ADVANCING THE TREATMENT AND CARE OF INDIVIDUALS WITH HYDROCEPHALUS. IT IS AWARDED EACH YEAR TO THE MOST PROMISING HYDROCEPHALUS-RELATED RESEARCH PAPER PRESENTED BY A NEUROSURGICAL RESIDENT AT THE PEDIATRIC SECTION MEETING OF THE AMERICAN ASSOCIATION OF NEUROLOGICAL SURGEONS (AANS)/CONGRESS OF NEUROLOGICAL SURGEONS (CNS) IN SEATTLE, WASHINGTON. SINCE THE HYDROCEPHALUS ASSOCIATION'S SCHOLARSHIP PROGRAM WAS ESTABLISHED IN 1994, WE HAVE AWARDED 111 SCHOLARSHIPS TO DESERVING
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IRS990/ProgSrvcAccomActy2Grp/GrantAmt041805
IRS990/ProgSrvcAccomActy3Grp/Desc0HA CONFERENCE PROGRAM HIGHLIGHTSTHE 13TH NATIONAL CONFERENCE ON HYDROCEPHALUS WAS HELD IN PORTLAND, OREGON, ON JULY 9-11, 2014. THE NATIONAL CONFERENCE ADDRESSES THE MEDICAL, EDUCATIONAL AND SOCIAL COMPLEXITIES OF LIVING WITH HYDROCEPHALUS, ATTRACTING 330 INDIVIDUALS FROM ALL OVER THE WORLD, INCLUDING PHYSICIANS, RESEARCHERS, AND INDIVIDUALS LIVING WITH HYDROCEPHALUS, CAREGIVERS, AND OTHERS. THIS EXTENSIVE PROGRAM INCLUDED 44 SPEAKERS WHO PRESENTED OVER 65 INTERACTIVE SESSIONS, RESEARCH UPDATES, AND EDUCATIONAL SEMINARS ADDRESSING MANY TOPICS.
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IRS990/ProgSrvcAccomActy3Grp/RevenueAmt054031
IRS990/ProgSrvcAccomActyOtherGrp/Desc0ADVOCACY
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IRS990/PYInvestmentIncomeAmt03066
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IRS990/PYOtherRevenueAmt0-136816
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IRS990/PYTotalRevenueAmt03461436
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IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt0MISCELLANEOUS RECEIPTS - 2010 AMOUNT: $ 4,780. 2011 AMOUNT: $ 3,864. 2012 AMOUNT: $ 5,949. 2013 AMOUNT: $ 15,351. 2014 AMOUNT: $ 8,245. DISPOSAL OF FIXED ASSETS - 2011 AMOUNT: $ -639. 2012 AMOUNT: $ -82. 2013 AMOUNT: $ 0. 2014 AMOUNT: $ 0.

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Filings

Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$3.46$0.49$2.97$3.56$4.41$0.85
2023Summary only. Only limited summary data is available for this year.$4.36$0.61$3.75$3.63$3.63$0.00
2022XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$4.52$0.85$3.66$4.15$3.62$0.53
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$3.80$0.54$3.25$3.91$2.75$1.16
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.75$0.67$2.08$3.25$3.14$0.11
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.36$0.38$1.97$3.41$3.86$0.45
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$3.03$0.62$2.42$4.57$4.90$0.33
2017Facts available. Structured filing facts are available, but richer extracted sections are limited.$3.18$0.43$2.75$3.86$4.76$0.89
2016Summary only. Only limited summary data is available for this year.$4.08$0.44$3.65$4.70$3.98$0.71
2015Detailed filing. Detailed filing data is available for this year.$3.02$0.07$2.95$3.36$3.28$0.08
2014Detailed filing. Detailed filing data is available for this year.$3.22$0.35$2.88$3.17$2.78$0.39
2013Summary only. Only limited summary data is available for this year.$2.77$0.27$2.50$3.46$2.42$1.04
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.65$0.19$1.46$1.84
2011Summary only. Only limited summary data is available for this year.$1.22$0.14$1.07$1.60$1.81$0.20
2010Summary only. Only limited summary data is available for this year.$1.68$0.40$1.27$1.87$1.97$0.10
Peer Organizations

Similar nonprofits based on the same Siviq industry and scale cohort. 2014 filings • 501(c)3 • $1M-$5M nonprofits