HYDROCEPHALUS ASSOCIATION

RESEARCHTHE HYDROCEPHALUS ASSOCIATION (HA) IS DEDICATED TO ADVANCING HIGH-QUALITY RESEARCH. EACH YEAR THE HA FUNDS TALENTED SCIENTISTS THROUGH DIRECT GRANT FUNDING ENABLING THEM TO LEVERAGE THESE PROJECTS AND SECURE LARGER FEDERAL GRANTS FOR GREATER IMPACT. THE HA FUNDS RESEARCH THAT IS ALIGNED WITH PATIENT-IDENTIFIED PRIORITIES TO IMPROVE UNDERSTANDING OF THE CONDITION, IDENTIFY AND TEST NEW TREATMENTS, MOVE DISCOVERIES TOWARDS CLINICAL USE, ENHANCE DIAGNOSIS, IMPROVE ACCESS TO CARE, AND ULTIMATELY ELEVATE THE QUALITY OF LIFE OF THOSE LIVING WITH HYDROCEPHALUS. GRANT PROGRAMS INCLUDE THE INNOVATOR AWARD, ACCELERATOR AWARD, NEUROPSYCHOLOGY AND COGNITION AWARD, ENGINEERING PRIZE, AND THE NEXT GENERATION AWARD. HA'S IMPACT IS AMPLIFIED THROUGH THE MANY RESEARCH NETWORKS THAT WE SUPPORT: 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 WITH ACCESS TO CRITICAL DATA. HANDS PROVIDES THE CONNECTIONS, TECHNOLOGY, AND TOOLS NEEDED TO SPUR AND SUPPORT INNOVATIVE 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 FUNDING BASIC, TRANSLATIONAL, AND CLINICAL RESEARCHERS, HA HAS CREATED A PIPELINE TO MOVE RESEARCH FROM THE BENCH TO THE BEDSIDE.

SUPPORT AND EDUCATION THE HYDROCEPHALUS ASSOCIATION IS DEEPLY COMMITTED TO IMPROVING THE LIVES OF THOSE AFFECTED BY HYDROCEPHALUS BY PROVIDING DIRECT SUPPORT AS WELL AS EDUCATIONAL RESOURCES IN COLLABORATION WITH A WIDE RANGE OF STAKEHOLDERS TO RAISE AWARENESS AND KNOWLEDGE. IN 2024, HA STAFF PROVIDED ONE-ON-ONE SUPPORT THROUGH PHONE CALLS, EMAILS, AND INTERACTIONS ON SOCIAL MEDIA TOTALING OVER 5,100 TOUCHES. HA CONDUCTED A TOTAL OF 201 VIRTUAL SOCIAL GATHERINGS AND/OR EDUCATIONAL MEETINGS WITH MEDICAL AND OTHER PROFESSIONALS JOINING AS GUEST SPEAKERS IN OUR LOCAL SUPPORT GROUPS - COMMUNITY NETWORKS. THESE EVENTS PROVIDED OUR COMMUNITY WITH THE OPPORTUNITY TO FIND FRIENDSHIP AND RECEIVE EDUCATION. OUR PEER SUPPORT VOLUNTEERS MADE 82 CONNECTIONS TO PROVIDE FIRST-HAND KNOWLEDGE AND EXPERIENCE ON LIVING WITH HYDROCEPHALUS. NEW NATIONAL LEVEL GROUP EMERGED, ONE FOR MEN WITH HYDROCEPHALUS. THE ASSOCIATION CONTINUES TO SUPPORT OUR YOUNG ADULTS' ACADEMIC PURSUITS THROUGH OUR SCHOLARSHIP PROGRAM. ESTABLISHED IN 1994, HA HAS AWARDED 252 SCHOLARSHIPS TO DESERVING FUTURE LEADERS OF THE HYDROCEPHALUS COMMUNITY. IN 2024, HA OFFERED 13 EDUCATIONAL SCHOLARSHIPS TO YOUNG ADULTS LIVING WITH HYDROCEPHALUS WHO EXHIBIT PROMISING LEADERSHIP SKILLS AND ARE INVOLVED IN THEIR COMMUNITIES.