Liabilities / Assets
47th percentile
Higher debt load relative to assets than 47% of similar nonprofits.
990 • Fiscal year 2013 • EIN 94-3000301
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
47th percentile
Higher debt load relative to assets than 47% of similar nonprofits.
Liabilities / Revenue
44th percentile
Higher debt load relative to revenue than 44% of similar nonprofits.
Net Margin
84th percentile
Higher net margin than 84% of similar nonprofits.
Top Officer Pay
90th percentile
Higher top officer pay than 90% of similar nonprofits.
Top officer pay equals 5.6% of source-year revenue.
Asset Growth
94th percentile
Faster asset growth than 94% of similar nonprofits.
Revenue Growth
87th percentile
Faster revenue growth than 87% of similar nonprofits.
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
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.
| Line | Beginning | End | Change |
|---|---|---|---|
| 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 | Book Value | Depreciation | Basis |
|---|---|---|---|
| Equipment | $39,528 | $31,638 | $71,166 |
| Other Land Buildings | $0 | $10,586 | $10,586 |
| Period | Beginning | Contrib. | Gain/Loss | Other Uses | End |
|---|---|---|---|---|---|
| 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 |
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Dawn Mancuso | CEO | FT | $180,250 | $12,193 | $192,443 |
| Name | Title |
|---|---|
| BARRETT O'CONNER | Chair |
| Paul Gross | Secretary/past Chair |
| Craig Brown | Senior Vice Chairman |
| Aseem Chandra | Vice Chair |
| David Browdy | Vice Chair |
| Debby Buffa | Director |
| John Kestle | Director |
| John Lawrence | Director |
| Marion Walker | Director |
| Marvin Sussman | Director |
| Mike Schwab | Director |
| Ralph Kistler | Director |
| Russell Fudge | Director |
| SHANNON O'CONNOR | Director |
| Rick Smith | Treasurer |
| Contribution Type | Contribution Count | Reported Amount | Valuation Method |
|---|---|---|---|
| Securities Publicly Traded | 4 | $100,913 | Market Quotation |
| Total Noncash Contributions | 4 | $100,913 | - |
| Line Item | Amount |
|---|---|
| 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 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| 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 |
| Line Item | Amount |
|---|---|
| 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 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| 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 |
| Line Item | Amount |
|---|---|
| Fundraising Direct Expenses | $157,772 |
| Fundraising Gross Income | $0 |
| Professional Fundraising Fees | $0 |
| Event | Gross Receipts | Gross Revenue | Direct Expenses | Net Income |
|---|---|---|---|---|
| Event 1 | $130,434 | - | $1,453 | - |
| Event 2 | $90,998 | - | $7,302 | - |
| Total Events | $1,190,006 | - | $157,772 | $-157,772 |
| Liability | Amount |
|---|---|
| Lease Payable | $10,429 |
“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.”
“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.”
“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.”
“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.”
“The organization's governing documents, conflict of interest policy, and financial statements are available to the public at the oraganization's office upon request.”
“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.”
“The audit committee selects and oversees an independent accounting firm to conduct the audit. No change in the selection method occurred this year.”
“The organization uses endowment funds for educational scholarships to young adults with hydrocephalus.”
“Small different adjustment”
This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.
| Path | # | Value |
|---|---|---|
| IRS990/AccountantCompileOrReviewInd | 0 | 1 |
| IRS990/AccountsPayableAccrExpnssGrp/BOYAmt | 0 | 99677 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 264412 |
| IRS990/AccountsReceivableGrp/BOYAmt | 0 | 38834 |
| IRS990/AccountsReceivableGrp/EOYAmt | 0 | 392 |
| IRS990/AcctCompileOrReviewBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/ActivitiesConductedPrtshpInd | 0 | 0 |
| IRS990/ActivityOrMissionDesc | 0 | 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. |
| IRS990/AdvertisingGrp/ManagementAndGeneralAmt | 0 | 2062 |
| IRS990/AdvertisingGrp/ProgramServicesAmt | 0 | 579 |
| IRS990/AdvertisingGrp/TotalAmt | 0 | 2641 |
| IRS990/AllOtherContributionsAmt | 0 | 2405180 |
| IRS990/AllOtherExpensesGrp/FundraisingAmt | 0 | 1906 |
| IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt | 0 | 6244 |
| IRS990/AllOtherExpensesGrp/ProgramServicesAmt | 0 | 1620 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 9770 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | 1 |
| IRS990/AuditCommitteeInd | 0 | 1 |
| IRS990/BackupWthldComplianceInd | 0 | 1 |
| IRS990/BooksInCareOfDetail/BusinessName/BusinessNameLine1 | 0 | DAWN MANCUSO |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 3012013811 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1 | 0 | 4340 EAST WEST HIGHWAY NO 905 |
| IRS990/BooksInCareOfDetail/USAddress/City | 0 | BETHESDA |
| IRS990/BooksInCareOfDetail/USAddress/State | 0 | MD |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCode | 0 | 20814 |
| IRS990/BusinessRlnWithFamMemInd | 0 | 0 |
| IRS990/BusinessRlnWithOfficerEntInd | 0 | 0 |
| IRS990/BusinessRlnWithOrgMemInd | 0 | 0 |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 1132500 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 1952896 |
| IRS990/ChangeToOrgDocumentsInd | 0 | 0 |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/CollectionsOfArtInd | 0 | 0 |
| IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt | 0 | 34231 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 104769 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 53443 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 192443 |
| IRS990/CompensationFromOtherSrcsInd | 0 | 0 |
| IRS990/CompensationProcessCEOInd | 0 | 1 |
| IRS990/CompensationProcessOtherInd | 0 | 0 |
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| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 3525 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 3697 |
| IRS990/ConflictOfInterestPolicyInd | 0 | 1 |
| IRS990/ConservationEasementsInd | 0 | 0 |
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| IRS990/CYInvestmentIncomeAmt | 0 | 3066 |
| IRS990/CYOtherExpensesAmt | 0 | 682981 |
| IRS990/CYOtherRevenueAmt | 0 | -136816 |
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| IRS990/CYRevenuesLessExpensesAmt | 0 | 1043898 |
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| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 3461436 |
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| IRS990/DepreciationDepletionGrp/FundraisingAmt | 0 | 3768 |
| IRS990/DepreciationDepletionGrp/ManagementAndGeneralAmt | 0 | 2258 |
| IRS990/DepreciationDepletionGrp/ProgramServicesAmt | 0 | 10294 |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 16320 |
| IRS990/Desc | 0 | RESEARCH: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/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 15 | 54.00 |
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| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 15 | 12193 |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 0 | BARRETT O'CONNER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | CRAIG BROWN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | DAVID BROWDY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | ASEEM CHANDRA |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | RICK SMITH |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | PAUL GROSS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | RALPH KISTLER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | MARVIN SUSSMAN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | RUSSELL FUDGE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | DEBBY BUFFA |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | MIKE SCHWAB |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | MARION WALKER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 12 | JOHN KESTLE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 13 | JOHN LAWRENCE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 14 | SHANNON O'CONNOR |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 15 | DAWN MANCUSO |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 15 | 180250 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 15 | 0 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 0 | CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | SENIOR VICE CHAIRMAN |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | VICE CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | VICE CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | TREASURER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | SECRETARY/PAST CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 9 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 10 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 11 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 12 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 13 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 14 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 15 | CEO |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | 1 |
| IRS990/FormationYr | 0 | 1986 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | 0 |
| IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/FSAuditedInd | 0 | 1 |
| IRS990/FundraisingActivitiesInd | 0 | 1 |
| IRS990/FundraisingAmt | 0 | 1190006 |
| IRS990/FundraisingDirectExpensesAmt | 0 | 157772 |
| IRS990/FundraisingGrossIncomeAmt | 0 | 0 |
| IRS990/GainOrLossGrp/SecuritiesAmt | 0 | -2436 |
| IRS990/GamingActivitiesInd | 0 | 0 |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 15 |
| IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt | 0 | 16000 |
| IRS990/GrantsToDomesticIndividualsGrp/TotalAmt | 0 | 16000 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 845623 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 845623 |
| IRS990/GrantsToIndividualsInd | 0 | 1 |
| IRS990/GrantsToOrganizationsInd | 0 | 1 |
| IRS990/GrantToRelatedPersonInd | 0 | 0 |
| IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt | 0 | 98477 |
| IRS990/GrossReceiptsAmt | 0 | 3720121 |
| IRS990/GrossSalesOfInventoryAmt | 0 | 5605 |
| IRS990/GroupReturnForAffiliatesInd | 0 | 0 |
| IRS990/IncludeFIN48FootnoteInd | 0 | 0 |
| IRS990/IndependentAuditFinclStmtInd | 0 | 1 |
| IRS990/IndependentVotingMemberCnt | 0 | 15 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 1 |
| IRS990/IndoorTanningServicesInd | 0 | 0 |
| IRS990/InfoInScheduleOPartIIIInd | 0 | X |
| IRS990/InfoInScheduleOPartIXInd | 0 | X |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InfoInScheduleOPartXIIInd | 0 | X |
| IRS990/InformationTechnologyGrp/FundraisingAmt | 0 | 17606 |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | 16576 |
| IRS990/InformationTechnologyGrp/ProgramServicesAmt | 0 | 10153 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 44335 |
| IRS990/InsuranceGrp/FundraisingAmt | 0 | 1036 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 2111 |
| IRS990/InsuranceGrp/ProgramServicesAmt | 0 | 2830 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 5977 |
| IRS990/InterestGrp/FundraisingAmt | 0 | 486 |
| IRS990/InterestGrp/ManagementAndGeneralAmt | 0 | 283 |
| IRS990/InterestGrp/ProgramServicesAmt | 0 | 1312 |
| IRS990/InterestGrp/TotalAmt | 0 | 2081 |
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| IRS990/InventoriesForSaleOrUseGrp/EOYAmt | 0 | 9151 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 5502 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 5502 |
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| IRS990/InvestmentsPubTradedSecGrp/EOYAmt | 0 | 303498 |
| IRS990/IRPDocumentCnt | 0 | 8 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
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| IRS990/LandBldgEquipBasisNetGrp/BOYAmt | 0 | 52617 |
| IRS990/LandBldgEquipBasisNetGrp/EOYAmt | 0 | 39528 |
| IRS990/LandBldgEquipCostOrOtherBssAmt | 0 | 81752 |
| IRS990/LegalDomicileStateCd | 0 | CA |
| IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt | 0 | 100913 |
| IRS990/LoanOutstandingInd | 0 | 0 |
| IRS990/LobbyingActivitiesInd | 0 | 1 |
| IRS990/LocalChaptersInd | 0 | 0 |
| IRS990/MaterialDiversionOrMisuseInd | 0 | 0 |
| IRS990/MembersOrStockholdersInd | 0 | 0 |
| IRS990/MethodOfAccountingAccrualInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | 1 |
| IRS990/MinutesOfGoverningBodyInd | 0 | 1 |
| IRS990/MissionDesc | 0 | THE 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/MoreThan5000KToOrgInd | 0 | 0 |
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| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 2496218 |
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| IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt | 0 | -2436 |
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| IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt | 0 | -157772 |
| IRS990/NetIncomeOrLossGrp/RelatedOrExemptFuncIncomeAmt | 0 | 5605 |
| IRS990/NetIncomeOrLossGrp/TotalRevenueColumnAmt | 0 | 5605 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 0 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | -5134 |
| IRS990/NoncashContributionsAmt | 0 | 100913 |
| IRS990/NondeductibleContributionsInd | 0 | 0 |
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| IRS990/OccupancyGrp/ManagementAndGeneralAmt | 0 | 14070 |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 64140 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 101690 |
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| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 18893 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 51694 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 199139 |
| IRS990/OfficerMailingAddressInd | 0 | 0 |
| IRS990/OperateHospitalInd | 0 | 0 |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsSFAS117Ind | 0 | X |
| IRS990/OtherAssetsTotalGrp/BOYAmt | 0 | 10109 |
| IRS990/OtherAssetsTotalGrp/EOYAmt | 0 | 11108 |
| IRS990/OtherChangesInNetAssetsAmt | 0 | 0 |
| IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt | 0 | 24542 |
| IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt | 0 | 11446 |
| IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt | 0 | 35608 |
| IRS990/OtherEmployeeBenefitsGrp/TotalAmt | 0 | 71596 |
| IRS990/OtherExpensesGrp/Desc | 0 | FOOD, MEALS & CATERING |
| IRS990/OtherExpensesGrp/Desc | 1 | SITE EXPENSES |
| IRS990/OtherExpensesGrp/Desc | 2 | TAXES & OTHER FEES |
| IRS990/OtherExpensesGrp/Desc | 3 | DUES & SUBSCRIPTIONS |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 4965 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 1 | 6796 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 2 | 3364 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 3 | 836 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 5858 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 623 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 2 | 1966 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 3 | 2734 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 35217 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 8227 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 2 | 2031 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 3 | 3239 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 46040 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 15646 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 7361 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 6809 |
| IRS990/OtherLiabilitiesGrp/BOYAmt | 0 | 94930 |
| IRS990/OtherLiabilitiesGrp/EOYAmt | 0 | 10429 |
| IRS990/OtherRevenueMiscGrp/BusinessCd | 0 | 900099 |
| IRS990/OtherRevenueMiscGrp/Desc | 0 | OTHER INCOME |
| IRS990/OtherRevenueMiscGrp/ExclusionAmt | 0 | 15351 |
| IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt | 0 | 15351 |
| IRS990/OtherRevenueTotalAmt | 0 | 15351 |
| IRS990/OtherSalariesAndWagesGrp/FundraisingAmt | 0 | 239876 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 63871 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 243876 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 547623 |
| IRS990/PartialLiquidationInd | 0 | 0 |
| IRS990/PayPremiumsPrsnlBnftCntrctInd | 0 | 0 |
| IRS990/PayrollTaxesGrp/FundraisingAmt | 0 | 19570 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 11941 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 21995 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 53506 |
| IRS990/PensionPlanContributionsGrp/FundraisingAmt | 0 | 3741 |
| IRS990/PensionPlanContributionsGrp/ManagementAndGeneralAmt | 0 | 347 |
| IRS990/PensionPlanContributionsGrp/ProgramServicesAmt | 0 | 3678 |
| IRS990/PensionPlanContributionsGrp/TotalAmt | 0 | 7766 |
| IRS990/PermanentlyRstrNetAssetsGrp/BOYAmt | 0 | 81118 |
| IRS990/PermanentlyRstrNetAssetsGrp/EOYAmt | 0 | 81118 |
| IRS990/PledgesAndGrantsReceivableGrp/BOYAmt | 0 | 76500 |
| IRS990/PledgesAndGrantsReceivableGrp/EOYAmt | 0 | 403717 |
| IRS990/PoliticalCampaignActyInd | 0 | 0 |
| IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt | 0 | 12760 |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 50769 |
| IRS990/PrincipalOfficerNm | 0 | DAWN MANCUSO |
| IRS990/ProfessionalFundraisingInd | 0 | 0 |
| IRS990/ProgSrvcAccomActy2Grp/Desc | 0 | PUBLIC 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/ExpenseAmt | 0 | 282200 |
| IRS990/ProgSrvcAccomActy3Grp/Desc | 0 | ADVOCACY: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 |
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| IRS990/ProgSrvcAccomActyOtherGrp/Desc | 0 | HYDROCEPHALUS CONFERENCE |
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| IRS990/PYRevenuesLessExpensesAmt | 0 | 375369 |
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| IRS990ScheduleA/Form990ScheduleAPartIVGrp/ExplanationTxt | 0 | MISCELLANEOUS 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/FormAndLineReferenceDesc | 0 | SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt | 0 | 3595186 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt | 0 | 2247530 |
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| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 1786923 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 1701538 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt | 0 | 11021081 |
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Displayed year
2013 • Form 990Detailed filing. Detailed filing data is available for this year.