Organizations Filed Purposes:
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.
FIND A CURE FOR HYDROCEPHALUS AND IMPROVE THE LIVES OF THOSE IMPACTED BY THE CONDITION.
RESEARCHTHE HYDROCEPHALUS ASSOCIATION (HA) REMAINS DEDICATED TO SUPPORTING HIGH QUALITY, HIGH-IMPACT RESEARCH THROUGH CONTINUED SUPPORT OF THE HA PATIENT POWERED INTERACTIVE ENGAGEMENT REGISTRY (HAPPIER), HA NETWORK FOR DISCOVERY SCIENCE (HANDS), HYDROCEPHALUS CLINICAL RESEARCH NETWORK (HCRN), AND ADULT HCRN (AHCRN). HAPPIER PROVIDES PATIENTS AND CAREGIVERS THE OPPORTUNITY TO ENGAGE IN RESEARCH WHILE PROVIDING RESEARCHERS ACCESS TO CRITICAL DATA. HANDS PROVIDES THE CONNECTIONS, TECHNOLOGY, AND TOOLS NEEDED TO SPUR AND SUPPORT INNOVATIVE BASIC AND TRANSLATIONAL RESEARCH, WHILE THE PEDIATRIC FOCUSED HCRN AND ADULT FOCUSED AHCRN PROVIDE THE STRUCTURE AND EXPERTISE NECESSARY TO EFFICIENTLY AND THOROUGHLY TEST THESE NEW TECHNOLOGIES AND CLINICAL THERAPIES WITH THE HIGHEST CLINICAL STANDARDS. BY LINKING BASIC, TRANSLATIONAL, AND CLINICAL RESEARCHERS, HA HAS CREATED A PIPELINE TO MOVE RESEARCH FROM THE BENCH TO THE BEDSIDE.
SUPPORT AND EDUCATIONTHE HYDROCEPHALUS ASSOCIATION IS DEEPLY COMMITTED TO IMPROVING THE LIVES OF THOSE AFFECTED BY HYDROCEPHALUS BY PROVIDING DIRECT SUPPORT AS WELL AS EDUCATIONAL RESOURCES IN COLLABORATION WITH A WIDE RANGE OF STAKEHOLDERS TO RAISE AWARENESS AND KNOWLEDGE. IN 2019 HA STAFF PROVIDED ONE-ON-ONE SUPPORT THROUGH PHONE CALLS, EMAILS, AND INTERACTIONS ON SOCIAL MEDIA TOTALING OVER 5,000 TOUCHES. WE GREW ENGAGEMENT IN OUR LOCAL SUPPORT GROUPS - COMMUNITY NETWORKS - BY OVER 20%. IN 2019 WE HAD 44 COMMUNITIES ACROSS THE COUNTRY EMPOWERING PATIENTS AND THEIR FAMILIES THROUGH MEETINGS AND ONLINE DISCUSSIONS. ADDITIONALLY, WE HAD 53 PEER SUPPORT VOLUNTEERS CONNECT WITH INDIVIDUALS TO PROVIDE FIRST-HAND KNOWLEDGE AND EXPERIENCE ON LIVING WITH HYDROCEPHALUS. TO FACILITATE IN PERSON EDUCATIONAL PROGRAMMING AND SUPPORT, WE PARTNERED WITH MERIDIAN HEALTH IN NEW JERSEY FOR AN EDUCATIONAL DAY THAT COVERED PEDIATRIC HYDROCEPHALUS IN THE MORNING AND NORMAL PRESSURE HYDROCEPHALUS IN THE AFTERNOON. WE ALSO PARTICIPATED IN NEURO-FOCUSED EVENTS IN CITIES ACROSS THE U.S. TO EDUCATE PEOPLE ABOUT HYDROCEPHALUS AND FIND FAMILIES THAT WOULD BENEFIT FROM OUR PROGRAMS BUT WHO MAY NOT KNOW WE EXIST. IN 2019, WE INTERACTED WITH OVER 1,500 PEOPLE AT 18 EVENTS ACROSS THE COUNTRY, RANGING FROM LOCAL HEALTH FAIRS TO THE EXHIBIT HALL AT THE AMERICAN ACEDEMY OF NEUROLOGY (AAN) BRAIN FAIR, PROVIDING THEM WITH VALUABLE INFORMATION AND RESOURCES. THE ASSOCIATION'S WORK ON TRANSITIONING FROM PEDIATRIC TO ADULT MEDICAL CARE CONTINUES TO BE A PRIMARY FOCUS. HA AND DOCTORS FROM OUR MEDICAL ADVISORY BOARD WERE FEATURED IN VARIOUS PUBLICATIONS IN BOTH MEDICAL JOURNALS AND MEDIA PUBLICATIONS. THE ASSOCIATION KICKED OFF A TRANSITION QUALITY IMPROVEMENT PROJECT WITH 5 NEUROSURGERY DIVISIONS IN PEDIATRIC HOSPITALS ACROSS THE U.S. THE ASSOCIATION CONTINUES TO SUPPORT OUR YOUNG ADULTS' ACADEMIC PURSUITS THROUGH OUR SCHOLARSHIP PROGRAM. ESTABLISHED IN 1994, HA HAS AWARDED 203 SCHOLARSHIPS TO DESERVING FUTURE LEADERS OF THE HYDROCEPHALUS COMMUNITY. IN 2019, HA OFFERED 12 EDUCATIONAL SCHOLARSHIPS TO YOUNG ADULTS LIVING WITH HYDROCEPHALUS WHO EXHIBIT PROMISING LEADERSHIP SKILLS AND ARE INVOLVED IN THEIR COMMUNITIES.
HA NATIONAL CONFERENCEHA CONNECTOUR BIENNIAL CONFERENCE, HA CONNECT, WAS HELD IN JUNE 2018. WITHMORE THAN 70 SESSIONS, 69 PRESENTERS AND MORE THAN 700 ATTENDEES, HACONNECT ENABLES PATIENTS AND FAMILIES TO HAVE AN OPPORTUNITY TO "MEETTHE EXPERTS" ON HYDROCEPHALUS CARE AND TREATMENT, AS WELL AS TO NETWORK WITH OTHER FAMILIES.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Diana Gray | PRESIDENT AND CEO | 45 | $195,982 |
| Brian Saphier | NATIONAL DIRECTOR OF FINANCE | 40 | $106,732 |
| Amanda Garzon | NATIONAL DIRECTOR OF PROGRAM SERVICES AND COMMUNIC | 45 | $101,380 |
| Aisha Heath | NATIONAL DIRECTOR OF DEVELOPMENT | 40 | $100,043 |
| Lydia Valadez-Mcstay | DIRECTOR | 3.5 | $0 |
| Sheryl Rosenberg | DIRECTOR | 3.5 | $0 |
| Mike Muhonen Md | DIRECTOR | 3.5 | $0 |
| Tessa Van Der Willigen | VICE CHAIR | 3.5 | $0 |
| Jason Preston | VICE CHAIR | 3.5 | $0 |
| Susan Fiorella | VICE CHAIR | 3.5 | $0 |
| Raymond R Moser Jr | VICE CHAIR | 3.5 | $0 |
| Aseem Chandra | IMMEDIATE PAST CHAIR | 3.5 | $0 |
| Michael Williams Md | DIRECTOR | 3.5 | $0 |
| Eileen Rodger | DIRECTOR | 3.5 | $0 |
| Jennifer Pope | DIRECTOR | 3.5 | $0 |
| Barrett O'Connor | DIRECTOR | 3.5 | $0 |
| Teresa Mastrangelo | DIRECTOR | 3.5 | $0 |
| John Lawrence | DIRECTOR | 3.5 | $0 |
| John Kestle Md Frcsc Facs | DIRECTOR | 3.5 | $0 |
| Mark Hamilton Md | DIRECTOR | 3.5 | $0 |
| Cliff Goldman | DIRECTOR | 3.5 | $0 |
| Guy Fish Md | DIRECTOR | 3.5 | $0 |
| Pam Finlayson | DIRECTOR | 3.5 | $0 |
| Sally Baldus | DIRECTOR | 3.5 | $0 |
| Hugh Allen | DIRECTOR | 3.5 | $0 |
| Rick Smith | DIRECTOR | 3.5 | $0 |
| Brett Weitz | CHAIR | 4.5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202021759349300217_public.xml