Hydrocephalus Assn

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 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 2021, HA STAFF PROVIDED ONE-ON-ONE SUPPORT THROUGH PHONE CALLS, EMAILS, AND INTERACTIONS ON SOCIAL MEDIA TOTALING OVER 3,000 TOUCHES. WE GREW ENGAGEMENT IN OUR LOCAL SUPPORT GROUPS - COMMUNITY NETWORKS - BY OVER 40%. TO ADHERE TO COVID 19 GUIDELINES PUT FORTH AT BOTH THE NATIONAL AND STATE LEVELS, HA CONDUCTED A TOTAL OF 170 VIRTUAL SOCIAL GATHERINGS AND/OR EDUCATIONAL MEETINGS WITH MEDICAL AND OTHER PROFESSIONALS JOINING AS GUEST SPEAKERS. THESE EVENTS PROVIDED OUR COMMUNITY WITH THE OPPORTUNITY TO FIND FRIENDSHIP AND RECEIVE EDUCATION. OUR PEER SUPPORT VOLUNTEERS MADE 91 CONNECTIONS TO PROVIDE FIRST-HAND KNOWLEDGE AND EXPERIENCE ON LIVING WITH HYDROCEPHALUS. THREE NEW NATIONAL LEVEL GROUPS EMERGED ONE FOR TEENAGERS (12-18 YEARS OLD) LIVING WITH HYDROCEPHALUS, ONE FOR PARENTS OF ADULT CHILDREN WITH INTELLECTUAL DISABILITIES, AND ONE FOR YOUNG ADULTS IN THEIR 20S LIVING WITH HYDROCEPHALUS. THE ASSOCIATION CONTINUES TO SUPPORT OUR YOUNG ADULTS' ACADEMIC PURSUITS THROUGH OUR SCHOLARSHIP PROGRAM. ESTABLISHED IN 1994, HA HAS AWARDED 215 SCHOLARSHIPS TO DESERVING FUTURE LEADERS OF THE HYDROCEPHALUS COMMUNITY. IN 2021, HA OFFERED 12 EDUCATIONAL SCHOLARSHIPS TO YOUNG ADULTS LIVING WITH HYDROCEPHALUS WHO EXHIBIT PROMISING LEADERSHIP SKILLS AND ARE INVOLVED IN THEIR COMMUNITIES.

ADVOCACY THE HYDROCEPHALUS ASSOCIATION ADVOCACY STEERING COMMITTEE HAS CONTINUED TO MONITOR AND SUPPORT KEY LEGISLATION THAT WILL BENEFIT THE HYDROCEPHALUS COMMUNITY. HYDROCEPHALUS WAS ONCE AGAIN INCLUDED ON THE LIST OF ELIGIBLE CONDITIONS TO RECEIVE FUNDING UNDER THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS (CDMRP) ADMINISTERED BY THE DEPARTMENT OF DEFENSE (DOD). THE CDMRP HAS APPROPRIATIONS OF $14.7 BILLION, WHICH ARE USED TO FUND THE BEST SCIENTIFIC AND MEDICAL RESEARCH. WE ARE PROUD OF THIS CONTINUED ACCOMPLISHMENT. HA CONTINUES TO BE ACTIVE IN ADVOCACY MEETINGS AND SIGN-ON LETTERS PUT TOGETHER AS PART OF THE NATIONAL HEALTH COUNCIL (NHC), AMERICAN BRAIN COALITION (ABC), NATIONAL ORGANIZATION FOR RARE DISEASE (NORD), RESEARCH!AMERICA, AND THE NATIONAL HEATH DEFENSE CONSORTIUM. HA ALSO HOSTED A VIRTUAL HILL DAY WHERE 180 ADVOCATES FROM ACROSS THE COUNTRY MET WITH MEMBERS OF CONGRESS OR THEIR STAFF VIA ZOOM URGED LEGISLATORS TO JOIN THE CONGRESSIONAL PEDIATRIC AND ADULT HYDROCEPHALUS CAUCUS, CO-SPONSOR A HYDROCEPHALUS AWARENESS MONTH RESOLUTION, AND SUPPORT HYDROCEPHALUS-RELATED RESEARCH FUNDING.

ADVOCACYTHE HYDROCEPHALUS ASSOCIATION ADVOCACY STEERING COMMITTEE HAS CONTINUED TO MONITOR AND SUPPORT KEY LEGISLATION THAT WILL BENEFIT THE HYDROCEPHALUS COMMUNITY. HYDROCEPHALUS WAS ONCE AGAIN INCLUDED ON THE LIST OF ELIGIBLE CONDITIONS TO RECEIVE FUNDING UNDER THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS (CDMRP) ADMINISTERED BY THE DEPARTMENT OF DEFENSE (D0D). THE CDMRP HAS APPROPRIATIONS OF $1.2 BILLION, WHICH ARE USED TO FUND THE BEST SCIENTIFIC AND MEDICAL RESEARCH. WE ARE PROUD OF THIS CONTINUED ACCOMPLISHMENT. HA CONTINUES TO BE ACTIVE IN ADVOCACY MEETINGS AND SIGN-ON LETTERS PUT TOGETHER AS PART OF THE NATIONAL HEALTH COUNCIL (NHC), AMERICAN BRAIN COALITION (ABC), NATIONAL ORGANIZATION FOR RARE DISEASE (NORD), RESEARCH!AMERICA, AND THE NATIONAL HEATH DEFENSE CONSORTIUM.