Civic Intelligence

Hydrocephalus Association Incorporated

990 • Fiscal year 2013 • EIN 94-3000301

Jan 01, 2013 to Dec 31, 2013 • Filed on Nov 11, 2014

4340 East West Highway No 90520814

(301) 202-3811

Siviq Scores

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

Liabilities / Assets

47th percentile

0.10x

Higher debt load relative to assets than 47% of similar nonprofits.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2013

Liabilities / Revenue

44th percentile

0.08x

Higher debt load relative to revenue than 44% of similar nonprofits.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2013

Net Margin

84th percentile

30%

Higher net margin than 84% of similar nonprofits.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2013

Top Officer Pay

90th percentile

$192,443

Higher top officer pay than 90% of similar nonprofits.

Top officer pay equals 5.6% of source-year revenue.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2013

Asset Growth

94th percentile

68%

Faster asset growth than 94% of similar nonprofits.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2012 to 2013

Revenue Growth

87th percentile

47%

Faster revenue growth than 87% of similar nonprofits.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2011 to 2013

Assets

Flat

$2,771,059

Flat from 2013

Net Assets

Flat

$2,496,218

Flat from 2013

Liabilities

Flat

$274,841

Flat from 2013

Revenue

Flat

$3,461,436

Flat from 2013

Expenses

Flat

$2,417,538

Flat from 2013

Net Income

Flat

$1,043,898

Flat 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 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

2013

Assets$2,771,059
Liabilities$274,841
Net Assets$2,496,218

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 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

2013

Revenue$3,461,436
Expenses$2,417,538
Net Income$1,043,898
Jump To
Filing Snapshot
Filing Period
Jan 1, 2013 to Dec 31, 2013
Signed
Nov 11, 2014
Return Version
2013v3.0
Gross Receipts
$3,720,121
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 hydrocephlaus.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$1,132,500$1,952,896▲ $820,396
Pledges and Grants Receivable$76,500$403,717▲ $327,217
Investments in Publicly Traded Securities$312,216$303,498▼ $8,718
Prepaid Expenses and Deferred Charges$12,760$50,769▲ $38,009
Land, Buildings, and Equipment, Net$52,617$39,528▼ $13,089
Inventories for Sale or Use$16,525$9,151▼ $7,374
Accounts Receivable$38,834$392▼ $38,442
Total Assets$1,652,061$2,771,059▲ $1,118,998
Other Assets Total$10,109$11,108▲ $999
Liabilities
Accounts Payable and Accrued Expenses$99,677$264,412▲ $164,735
Other Liabilities$94,930$10,429▼ $84,501
Total Liabilities$194,607$274,841▲ $80,234
Net Assets / Fund Balance
Unrestricted Net Assets$900,005$1,840,302▲ $940,297
Temporarily Rstr Net Assets$476,331$574,798▲ $98,467
Permanently Rstr Net Assets$81,118$81,118→ $0
Total Net Assets Fund Balance$1,457,454$2,496,218▲ $1,038,764
Total Liabilities and Net Assets / Fund Balance$1,652,061$2,771,059▲ $1,118,998

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$39,528$31,638$71,166
Other Land Buildings$0$10,586$10,586

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
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
2009$80,218-▲ $1,071-$80,218
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Dawn MancusoCEOFT$180,250$12,193$192,443

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
Mike SchwabDirector
Ralph KistlerDirector
Russell FudgeDirector
SHANNON O'CONNORDirector
Rick SmithTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$3,595,186
Program Service Revenue
$0
Investment Income
$3,066
Other Revenue
$-136,816
All Other Contributions
$2,405,180
Change in Net Assets
$1,043,898

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 Traded4$100,913Market Quotation
Total Noncash Contributions4$100,913-

Audited Revenue Reconciliation

Revenue per Audited Statements
$3,461,436
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$-5,132
Total Revenue per Audited Statements
$3,456,304
Total Revenue per Form 990
$3,461,436
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$872,934
Grants and Similar Amounts Paid$861,623
Other Expenses$682,981
Total Fundraising Expense$592,753
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$845,623--$845,623
Other Salaries and Wages$243,876$63,871$239,876$547,623
Office Expenses$51,694$18,893$128,552$199,139
Current Officers, Directors, Trustees, and Key Employees$53,443$104,769$34,231$192,443
Travel$20,710$39,642$60,150$120,502
Occupancy$64,140$14,070$23,480$101,690
Other Employee Benefits$35,608$11,446$24,542$71,596
Fees for Services Other$33,444$5,881$17,676$57,001
Payroll Taxes$21,995$11,941$19,570$53,506
Information Technology$10,153$16,576$17,606$44,335
Fees for Services Accounting-$43,972-$43,972
Depreciation Depletion$10,294$2,258$3,768$16,320
Grants to Domestic Individuals$16,000--$16,000
All Other Expenses$1,620$6,244$1,906$9,770
Pension Plan Contributions$3,678$347$3,741$7,766
Other Expenses$3,239$2,734$836$6,809
Insurance$2,830$2,111$1,036$5,977
Conferences and Meetings$3,525-$172$3,697
Advertising$579$2,062-$2,641
Interest$1,312$283$486$2,081
Total Functional Expenses$1,469,238$355,547$592,753$2,417,538

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$2,417,538
Total Expenses per Audited Statements$2,417,538
Total Expenses per Form 990$2,417,538
Expenses Not Reported on Financial Statements$0
Expenses Not Reported on Form 990$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
87-0453633-501(c)(3)To Fund Hydrocephalus Research Conducted at the Hydrocephalus Clinical Research Network.$500,063
87-6000525-501(c)(3)DR. MCALLISTER'S STUDY INVESTIGATES THE ABNORMAL BLOCKAGE OF CEREBROSPINAL FLUID FLOW. THE STUDY USES ANIMAL MODELS AND PATIENT CSF TO INCREASE OUR UNDERSTANDING OF THE DAMAGE THAT OCCURS IN THE HYDROCEPHALIC BRAIN. USING THIS INFORMATION CAN HELP ADVANCE THE DEVELOPMENT OF NOVEL TRANSPLANTATION THERAPIES.$160,000
31-0537130-501(c)(3)Funding for Studying the Role of Neural Progenitor Cells in the Development of Neonatal Hydrocephalus.$133,000
63-6005396-501(c)(3)To Fund Hydrocephalus Research Conducted at the Local Hydrocephalus Clinical Research Network Site.$50,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$157,772
Fundraising Gross Income$0
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Event 1$130,434-$1,453-
Event 2$90,998-$7,302-
Total Events$1,190,006-$157,772$-157,772
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Lease Payable$10,429
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
Yes
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
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.

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

The process for determing 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

EIN
94-3000301
Phone
3012023811

Signing Officer

Name
Dawn Mancusco
Title
Chief Executive Officer
Phone
3012023811
Signed
2014-11-11
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Dawn Mancuso
Formed
1986
Legal Domicile
CA
Voting Board Members
15
Independent Board Members
15
Employees
13
Volunteers
1,200

Preparer

Preparer
Hydeh Ghaffari
Phone
5108346542
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 24E

Employee education: program service expenses 87. Management and general expenses 4,319. Fundraising expenses 426. Total expenses 4,832. Miscellanoues expenses: program service expenses 1,239. Management and general expenses 1,925. Fundraising expenses 1,198. Total expenses 4,362. Prize/award: program service expenses 294. Management and general expenses 0. Fundraising expenses 282. Total expenses 576.

Form 990 Part XI - 2C

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

Financial Statement Notes

PART V, LINE 4:

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

PART XI, LINE 2D - OTHER ADJUSTMENTS:

Small different adjustment

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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 HYDROCEPHLAUS.
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IRS990/Desc0RESEARCH:THIS YEAR (2013) MARKED THE END OF PHASE ONE OF OUR REASON FOR HOPE RESEARCH FUNDING CAMPAIGN, WHICH STARTED IN 2009 TO FUND THE HYDROCEPHALUS ASSOCIATION'S (HA) RESEARCH INITIATIVE. WE ARE PROUD TO REPORT THAT AS A COMMUNITY WE SURPASSED OUR $3 MILLION FUNDING GOAL, RAISING A TOTAL OF $3,065,046 FOR HYDROCEPHALUS RESEARCH. OVER THE PAST FIVE YEARS, HA HAS FUNDED A TOTAL OF $2.7 MILLION IN BOTH BASIC AND CLINICAL HYDROCEPHALUS RESEARCH. THESE RESEARCH PROJECTS ARE FOCUSED ON UNDERSTANDING THE CAUSES OF HYDROCEPHALUS AND DEVELOPING BETTER TREATMENTS IN ORDER TO, ULTIMATELY, FIND A CURE. IN 2013, WE PARTNERED WITH THE RUDI SCHULTE RESEARCH INSTITUTE (RSRI) TO FUND A NEW RESEARCH VENTURE. RSRI CHOSE MARK WAGSHUL, PHD, FOR HIS PROPOSAL MR ELASTOGRAPHY: A NONINVASIVE TOOL FOR THE MANAGEMENT OF SHUNTED PEDIATRIC HYDROCEPHALUS. DR. WAGSHUL WILL UTILIZE THIS NONINVASIVE MRI-BASED TECHNIQUE TO SEE IF BRAIN COMPLIANCE CAN HELP DETERMINE THE BEST TREATMENT OPTION FOR PEDIATRIC HYDROCEPHALIC PATIENTS. THE GRANT IS FOR $600,000 OVER 3 YEARS.DR. WAGSHUL IS AN ASSOCIATE PROFESSOR IN THE DEPARTMENT OF RADIOLOGY AT ALBERT EINSTEIN COLLEGE OF MEDICINE. HE RECEIVED A B.A. IN PHYSICS FROM RUTGERS UNIVERSITY AND A PHD IN PHYSICS FROM HARVARD UNIVERSITY. HE COMPLETED A POSTDOCTORAL FELLOWSHIP AT THE NATIONAL INSTITUTE FOR STANDARDS AND TECHNOLOGY. HA AWARDED A SECOND GRANT TO TIMOTHY VOGEL, MD, OF CINCINNATI CHILDREN'S HOSPITAL. DR. VOGEL'S PROPOSAL, THE ROLE OF NEURAL PROGENITOR CELLS IN NEONATAL HYDROCEPHALUS, FOCUSES ON CILIA, OR HAIR-LIKE STRUCTURES ON THE SURFACE OF NEURON PROGENITOR CELLS (NPCS) IN THE BRAIN THAT CONTRIBUTE TO CSF MOVEMENT. HE WILL BE EXPLORING HOW DEFECTS IN CILIA MOTILITY CONTRIBUTE TO THE DEVELOPMENT OF NEONATAL HYDROCEPHALUS. THE GRANT IS FOR $400,000 OVER 3 YEARS.DR. VOGEL IS A PEDIATRIC NEUROSURGEON AND ASSISTANT PROFESSOR OF PEDIATRIC NEUROSURGERY AND DEVELOPMENTAL BIOLOGY AT CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER. HE HOLDS A B.A. IN CHEMISTRY FROM PRINCETON UNIVERSITY AND AN MD FROM COLUMBIA UNIVERSITY COLLEGE OF PHYSICIANS AND SURGEONS.THE SUCCESS OF THE HCRN PROVIDED THE CATALYST FOR ESTABLISHING AN ADULT HYDROCEPHALUS CLINICAL RESEARCH NETWORK (AHCRN). IN 2012, HA BEGAN WORKING WITH DISTINGUISHED ADULT HYDROCEPHALUS RESEARCHERS INCLUDING NEUROSURGEONS, NEUROLOGISTS AND NEUROPSYCHOLOGISTS TO ESTABLISH THE NETWORK. THE GOALS OF THE ADULT NETWORK ARE TO IMPROVE THE LIVES OF ADULTS WITH HYDROCEPHALUS, RAISE AWARENESS OF THE CONDITION AND TACKLE THE UNIQUE ISSUES TRANSITIONAL PATIENTS, ADULT CONGENITAL PATIENTS AND OTHER ADULT-ONSET PATIENTS FACE.FIVE SITES WERE SELECTED AND PROGRESS WAS MADE THROUGHOUT 2013 TO DEVELOP ESSENTIAL DATA ELEMENTS AND PROTOCOLS FOR THE NETWORK. THE FIVE PARTICIPATING RESEARCHERS AND SITES IN THE NETWORK INCLUDE: MARK HAMILTON, MD, OF THE UNIVERSITY OF CALGARY; HEATHER KATZEN, PHD, OF THE UNIVERSITY OF MIAMI; PETRA KLINGE, MD, OF BROWN UNIVERSITY; MARK LUCIANO, MD, PHD, OF CLEVELAND CLINIC; NORMAN RELKIN, MD, PHD, OF WEILL CORNELL MEDICAL COLLEGE; AND MICHAEL WILLIAMS, MD, OF THE SANDRA AND MALCOLM BERMAN BRAIN & SPINE INSTITUTE.DR. JOHN KESTLE, CO-FOUNDER OF THE PEDIATRIC-FOCUSED HCRN, ASSISTED IN THE EFFORT TO ESTABLISH AHCRN, BRINGING HIS RICH HISTORY IN HYDROCEPHALUS RESEARCH TO BENEFIT THE COLLABORATION. THE DEVELOPMENT OF THE ADULT NETWORK IS ESSENTIAL FOR HA'S MISSION TO IMPROVE THE LIVES OF ALL PEOPLE WITH HYDROCEPHALUS. THE ADULT NETWORK WILL INCREASE IN IMPORTANCE AS PEDIATRIC PATIENTS TRANSITION TO ADULTHOOD AND AWARENESS OF ADULT-ONSET HYDROCEPHALUS INCREASES. THE PEDIATRIC-FOCUSED HYDROCEPHALUS CLINICAL RESEARCH NETWORK (HCRN) EXPANDED ITS NETWORK FROM SEVEN TO NINE CENTERS WITH THE ADDITIONS OF VANDERBILT UNIVERSITY AND THE UNIVERSITY OF BRITISH COLUMBIA. INITIALLY, THE TWO CENTERS FOCUSED ON ADDING PATIENTS TO THE HCRN REGISTRY AND PARTICIPATING IN THE HCRN QUALITY IMPROVEMENT STUDY FOR POST-SURGICAL INFECTIONS. THEY ARE NOW COMPLETELY INCORPORATED INTO THE HCRN
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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/ProgSrvcAccomActy2Grp/Desc0PUBLIC SUPPORT AND EDUCATION:THE 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 2013, 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 LAUNCHED A NEW 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. WE HOSTED OUR FIRST WEBINAR, "WHAT IF IT ISN'T ALZHEIMER'S OR PARKINSON'S?" PRESENTED BY DR. MICHAEL WILLIAMS, DURING HYDROCEPHALUS AWARENESS MONTH IN SEPTEMBER. THIS WEBINAR WAS TARGETED TO INDIVIDUALS WHO HAVE BEEN DIAGNOSED WITH NORMAL PRESSURE HYDROCEPHALUS, CAREGIVERS OF OLDER ADULTS, MEDICAL PROFESSIONALS, NURSING HOME STAFF AND THOSE WHO HAVE BEEN TREATED FOR PARKINSON'S, ALZHEIMER'S OR DEMENTIA.IN 2013, WE RESTRUCTURED OUR SUPPORT GROUPS TO SERVE AS BROADER-BASED COMMUNITY NETWORKS. 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 39 NETWORKS, WHICH HELD 80 EVENTS INVOLVING NEARLY 1,500 PARTICIPANTS. IN ADDITION, WE HAVE 25 ACTIVE VIRTUAL NETWORKS WITH ONLINE FACEBOOK GROUPS CONSISTING OF MORE THAN 1,200 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 TORONTO, CANADA. SINCE THE HYDROCEPHALUS ASSOCIATION'S SCHOLARSHIP PROGRAM WAS ESTABLISHED IN 1994, WE HAVE AWARDED 103 SCHOLARSHIPS TO DESERVING FUTURE LEADERS OF OUR COMMUNITY. THIS YEAR, WE WERE ABLE TO OFFER NINE EDUCATIONAL SCHOLARSHIPS TO YOUNG ADULTS LIVING WITH HYDROCEPHALUS WHO HAVE EXHIBITED PROMISING LEADERSHIP SKILLS AND ARE INVOLVED IN THEIR COMMUNITIES. DESPITE THE TREMENDOUS CHALLENGES AND OBSTACLES THEY FACE, THESE STUDENTS CONTINUE TO EXCEL IN THE CLASSROOM, VOLUNTEER AND GIVE BACK TO THEIR COMMUNITIES, AND INSPIRE THEIR PEERS AND ALL OF US. THESE AWARDS WERE MADE POSSIBLE THROUGH THE SUPPORT OF THE FOLLOWING ENDOWED SCHOLARSHIP FUNDS: GERARD SWARTZ FUDGE MEMORIAL SCHOLARSHIP FUND, MORRIS L. AND REBECCA ZISKIND MEMORIAL SCHOLARSHIP FUND, ANTHONY ABBENE SCHOLARSHIP FUND, THE JUSTIN SCOT ALSTON MEMORIAL SCHOLARSHIP FUND, THE MARIO J. TOCCO HYDROCEPHALUS FOUNDATION SCHOLARSHIP FUND AND THE GIAVANNA MARIE MELOMO MEMORIAL SCHOLARSHIP FUND. FOR THE SECOND YEAR, WE ALSO AWARDED FIVE ADDITIONAL SCHOLARSHIPS THROUGH OUR TEENS TAKE CHARGE (TTC) PROGRAM. TTC'S SCHOLARSHIP AWARDS WERE MADE POSSIBLE THROUGH THE CONTINUED SUPPORT OF THE MEDTRONIC FOUNDATION AND ALL THE INDIVIDUALS WHO HELD EVENTS AND CONTRIBUTED TO THE PROGRAM.THE TEENS TAKE CHARGE (TTC) PROGRAM CONTINUES TO FACILITATE AN ACTIVE ONLINE COMMUNITY OF MORE THAN 1,500 TEENS AND YOUNG ADULTS AFFECTED BY HYDROCEPHALUS, AND THEIR SIBLINGS. THIS FORUM PROVIDES AN OPPORTUNITY FOR YOUNG ADULTS TO OPENLY SHARE THEIR JOURNEY AND PROVIDE PEER-TO-PEER SUPPORT, ENCOURAGEMENT AND ADVICE. TTC MEMBERS ARE INVOLVED IN VARIOUS FUNDRAISING AND AWARENESS ACTIVI
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt0282200
IRS990/ProgSrvcAccomActy3Grp/Desc0ADVOCACY:IN 2013, THE ASSOCIATION DEVELOPED A STEERING COMMITTEE TO OVERSEE ITS ADVOCACY EFFORTS; EXPANDED IT WORK WITH A NUMBER OF NATIONAL HEALTH ADVOCACY GROUPS AND COALITIONS, AND EDUCATED MEMBERS OF CONGRESS AND OTHER PUBLIC POLICY MAKERS ABOUT THE NEED FOR MORE FUNDING FOR HYDROCEPHALUS RESEARCH.ADVOCACY STEERING COMMITTEE: TO HELP DEVELOP AND DRIVE THE ASSOCIATION'S ADVOCACY STRATEGY, AN ADVOCACY STEERING COMMITTEE WAS ESTABLISHED IN 2013. THE COMMITTEE DEVELOPS THE WORK PLAN AND TACTICS EMPLOYED EACH YEAR TO ULTIMATELY ACHIEVE OUR PRIMARY ADVOCACY GOAL -- TO ENSURE THE FEDERAL GOVERNMENT INVESTS ADEQUATE FUNDS TO SUPPORT PATIENTS AND THEIR CAREGIVERS. SPECIFICALLY, THE COMMITTEE WILL ENSURE THAT CONGRESS: UNDERSTANDS THE BREADTH AND DEPTH OF IMPACT OF HYDROCEPHALUS ON OUR PEOPLE; PRIORITIZES FUNDING HYDROCEPHALUS RESEARCH FOR IMPROVED TREATMENTS AND CURES; AND SUPPORTS THOSE AFFECTED BY HYDROCEPHALUS WITH APPROPRIATE PROGRAMS. COALITION BUILDING: HA WORKS WITH A NUMBER OF NATIONAL HEALTH ADVOCACY GROUPS TO PROMOTE THE IMPORTANCE OF FEDERALLY SPONSORED RESEARCH. WE JOINED RESEARCH!AMERICA, THE NATION'S LARGEST NOT-FOR-PROFIT PUBLIC EDUCATION AND ADVOCACY ALLIANCE WORKING TO MAKE RESEARCH TO IMPROVE HEALTH A HIGHER NATIONAL PRIORITY. THROUGH THIS COALITION, WE URGED CONGRESS AND THE ADMINISTRATION TO INCREASE FUNDING FOR THE NATIONAL INSTITUTES OF HEALTH (NIH), CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC), AGENCY FOR HEALTHCARE RESEARCH AND QUALITY (AHRQ), FOOD AND DRUG ADMINISTRATION (FDA) AND NATIONAL SCIENCE FOUNDATION (NSF) AT LEVELS THAT KEEP PACE WITH SCIENTIFIC OPPORTUNITY. WE ALSO ADVOCATED FOR FEDERAL FUNDING FOR GLOBAL HEALTH RESEARCH AND A LEGISLATIVE AND REGULATORY CLIMATE THAT STIMULATES GROWTH IN INDUSTRY RESEARCH AND DEVELOPMENT. IN ADDITION, HA WAS ACTIVE IN ADVOCACY MEETINGS AND SIGN-ON LETTERS PUT TOGETHER AS PART OF THE NATIONAL HEALTH COUNCIL (NHC), THE AMERICAN BRAIN COALITION (ABC), THE RARE DISEASE LEGISLATIVE ADVOCATES (RDLA), AND THE NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD). TOPICS HAVE INCLUDED THE IMPLEMENTATION OF THE AFFORDABLE CARE ACT, THE EFFECTS OF SEQUESTRATION ON RESEARCH FUNDING, AND THE ORPHAN DRUG ACT.CONGRESSIONAL DIRECTED MEDICAL RESEARCH: HA ADVOCATED FOR THE INCLUSION OF HYDROCEPHALUS ON THE LIST OF CONDITIONS ELIGIBLE FOR FUNDING UNDER THE DEPARTMENT OF DEFENSE'S CONGRESSIONAL DIRECTED MEDICAL RESEARCH PROGRAMS (CDMRP). GREAT STRIDES WERE MADE TO EDUCATE THE HOUSE AND SENATE SPENDING AND AUTHORIZING COMMITTEES THAT ALLOCATE MONEY FOR FEDERAL HEALTH CARE RESEARCH. HA REACHED OUT TO HEALTH AND DEFENSE APPROPRIATORS AND AUTHORIZERS TO HELP INCREASE FUNDING FOR HYDROCEPHALUS RESEARCH AT NIH AND TO CREATE A NEW FUNDING STREAM FOR HYDROCEPHALUS RESEARCH THROUGH THE DEPARTMENT OF DEFENSE'S PEER REVIEWED MEDICAL RESEARCH PROGRAM (PRMRP). WE WERE SUCCESSFUL IN GAINING SUPPORT ON THE SENATE APPROPRIATIONS SIDE FOR THE HYDROCEPHALUS SPECIFIC LANGUAGE THAT REPRESENTATIVE ANDREWS INCLUDED IN THE NATIONAL DEFENSE AUTHORIZATION ACT. UNFORTUNATELY, DUE TO PARTISAN BATTLES WITHIN CONGRESS OVER OTHER ISSUES, THE LANGUAGE INCLUDED IN A BILL PASSED BY THE HOUSE OF REPRESENTATIVES WAS NOT INCLUDED IN THE FINAL DOD APPROPRIATIONS BILL PASSED BY A CONFERENCE COMMITTEE OF BOTH THE HOUSE AND SENATE. THE ASSOCIATION CONTINUES TO PURSUE THIS INITIATIVE AT PRESENT.NATIONAL INSTITUTES OF HEALTH PARTNERSHIP: THE NATIONAL INSTITUTES OF HEALTH (NIH) NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE (NINDS) HOSTED THEIR ANNUAL NONPROFIT FORUM. THE FORUM, "PROGRESS THROUGH PARTNERSHIP," EMPHASIZED THE ROLE NONPROFITS PLAY IN LINKING SCIENTISTS AT NINDS WITH THE PATIENT COMMUNITY FOR BETTER RESEARCH OUTCOMES. PAUL GROSS, HA BOARD MEMBER AND MEMBER OF THE NINDS ADVISORY COUNCIL, SERVED ON THE PLANNING COMMITTEE THAT HELPED BUILD THE AGENDA FOR THE EVENT. REPRESENTATIVES FROM OVER 80 NONPROFIT ORGANIZATIONS HAD THE OPPORTUNITY TO LISTEN TO AND INTERACT WITH KEY NINDS OFFICIALS, INCLUDING DR. STORY
IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt041721
IRS990/ProgSrvcAccomActyOtherGrp/Desc0HYDROCEPHALUS CONFERENCE
IRS990/ProgSrvcAccomActyOtherGrp/ExpenseAmt024541
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt02247530
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt0111122
IRS990/PYInvestmentIncomeAmt010774
IRS990/PYOtherExpensesAmt0875313
IRS990/PYOtherRevenueAmt0-121354
IRS990/PYProgramServiceRevenueAmt076921
IRS990/PYRevenuesLessExpensesAmt0375369
IRS990/PYSalariesCompEmpBnftPaidAmt0820867
IRS990/PYTotalExpensesAmt01838502
IRS990/PYTotalProfFndrsngExpnsAmt031200
IRS990/PYTotalRevenueAmt02213871
IRS990/QuidProQuoContributionsInd00
IRS990/RcvFndsToPayPrsnlBnftCntrctInd00
IRS990/ReconcilationRevenueExpnssAmt01043898
IRS990/RegularMonitoringEnfrcInd01
IRS990/RelatedEntityInd00
IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd01
IRS990/ReportOtherAssetsInd00
IRS990/ReportOtherLiabilitiesInd01
IRS990/ReportProgramRelatedInvstInd00
IRS990ScheduleA/Form990ScheduleAPartIVGrp/ExplanationTxt0MISCELLANEOUS RECEIPTS - 2009 AMOUNT: $ 2,773. 2010 AMOUNT: $ 4,780. 2011 AMOUNT: $ 3,864. 2012 AMOUNT: $ 5,949. 2013 AMOUNT: $ 15,351. DISPOSAL OF FIXED ASSETS - 2011 AMOUNT: $ -639. 2012 AMOUNT: $ -82. 2013 AMOUNT: $ 0.
IRS990ScheduleA/Form990ScheduleAPartIVGrp/FormAndLineReferenceDesc0SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME:
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt03595186
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt02247530
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt01689904
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt01786923
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt01701538
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt011021081

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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
2013Detailed filing. Detailed filing data is available for this year.$2.77$0.27$2.50$3.46$2.42$1.04
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