National Ataxia Foundation Inc

TO ACCELERATE THE DEVELOPMENT OF TREATMENTS AND A CURE WHILE WORKING TO IMPROVE THE LIVES OF THOSE LIVING WITH ATAXIA.

INCREASED AWARENESS ABOUT HEREDITARY AND SPORADIC ATAXIA DISORDERS IS PROMOTED THROUGH A VARIETY OF EDUCATION PROGRAMS AND MATERIALS FOR ATAXIA FAMILIES, RESEARCHERS, PHYSICIANS, ALLIED HEALTH PROFESSIONALS, GOVERNMENT AGENCIES, LEGISLATIVE OFFICIALS AND THE GENERAL PUBLIC. THE FOUNDATION PUBLISHES GENERATIONS, AN ANNUAL NEWSLETTER AND A MONTHLY E-NEWSLETTER DEVOTED TO ATAXIA RELATED ARTICLES INCLUDING THE LATEST RESEARCH AND OTHER INFORMATION BENEFICIAL TO INDIVIDUALS WITH ATAXIA. THE FOUNDATION ALSO OFFERS SEVERAL WEBINARS THROUGHOUT THE YEAR ON CURRENT TOPICS RELEVANT TO THE ATAXIA COMMUNITY. OTHER EDUCATIONAL MATERIALS, SUCH AS BOOKS, VIDEOS AND FACT SHEETS ARE PROVIDED TO PERSONS WITH ATAXIA, FAMILY MEMBERS AND HEALTH CARE PROFESSIONALS ON A "DIRECT REQUEST" BASIS THROUGH THE NAF OFFICE. THE FOUNDATION'S ADVOCACY ACTIVITIES, SUCH AS HILL DAYS, SERVE TO RAISE AWARENESS ABOUT ATAXIA AND POLICY ISSUES IMPACTING THE ATAXIA COMMUNITY. THE ANNUAL ATAXIA CONFERENCE, AND SPONSORSHIP AND/OR/PARTICIPATION IN NATIONAL AND INTERNATIONAL MEETINGS, SYMPOSIUMS AND SEMINARS ALSO SERVE TO INCREASE ATAXIA AWARENESS.THE NATIONAL ATAXIA FOUNDATION ATTEMPTS TO LOCATE PEOPLE AND FAMILIES WITH HEREDITARY AND SPORADIC ATAXIA IN ORDER TO PROVIDE THEM WITH INFORMATION ABOUT ATAXIA. THIS IS ACCOMPLISHED BY PROVIDING UPDATED INFORMATION ABOUT ATAXIA TO THE GENERAL PUBLIC BY MAINTAINING A WEBSITE, SOCIAL MEDIA CHANNELS, NEWSLETTERS, AND WEBINARS. THE FOUNDATION ASSISTS INDIVIDUALS AND FAMILIES BY IDENTIFYING CLINICAL RESOURCES AND MAKING APPROPRIATE REFERRALS FOR NEUROLOGICAL CARE, GENETIC COUNSELING AND GENE TESTING. THE FOUNDATION ALSO ASSISTS PEOPLE WITH LOCATING RESOURCES WITHIN THEIR OWN COMMUNITIES, INCLUDING SUPPORT GROUPS. THE FOUNDATION'S NETWORK OF SUPPORT GROUPS THROUGHOUT THE COUNTRY PROVIDE FAMILIES WITH ACCESS TO IN-PERSON AND VIRTUAL MEETING OPPORTUNITIES.

THE NATIONAL ATAXIA FOUNDATION (NAF) ENCOURAGES AND PROMOTES RESEARCH ON HEREDITARY AND SPORADIC ATAXIAS THROUGH THREE RESEARCH FUNDING PROGRAMS: (1) "SEED MONEY" RESEARCH GRANTS; (2) POST DOC FELLOWSHIP AWARDS; AND (3) YOUNG INVESTIGATOR AWARDS. PEER REVIEW IS PROVIDED BY NAF'S MEDICAL AND RESEARCH ADVISORY BOARD MEMBERS AND LEADING ATAXIA SCIENTISTS AND CLINICIANS, BOTH DOMESTIC AND INTERNATIONAL. THE GOALS OF NAF'S RESEARCH PROGRAM ARE TO FURTHER ELUCIDATE THE DISEASE MECHANISM OF ATAXIA, BRING EARLY-CAREER CLINICIANS AND SCIENTISTS INTO ATAXIA RESEARCH AND MOVE THE FIELD TOWARD DEVELOPING TREATMENTS AND A CURE FOR ATAXIA. IN ADDITION, NAF FUNDS THREE PROGRAMS THAT ARE BEYOND THE TRADITIONAL GRANT FUNDING MECHANISM. THESE ARE NON-COMPETITIVE PROGRAMS WHICH INCLUDE THE BRAIN TISSUE DONATION PROGRAM, THE CENTRALIZED ATAXIA GENOMIC CORE AND CLINICAL RESEARCH CONSORTIUM FOR THE STUDY OF CEREBELLAR ATAXIA. BECAUSE OF THE IMPORTANCE OF COLLABORATION AMONG THE MULTI-STAKEHOLDERS FOR ATAXIA RESEARCH, THE FOUNDATION ORGANIZES SCIENTIFIC MEETINGS.

THE NAF DRUG DEVELOPMENT COLLABORATIVE IS A PRE-COMPETITIVE PHARMACEUTICAL INDUSTRY CONSORTIUM WITH A PRINCIPAL GOAL OF ACCELERATING THE DEVELOPMENT OF TREATMENTS FOR ATAXIA. THE GROUP WILL ADDRESS THE MANY SHARED OPPORTUNITIES AND CHALLENGES IN THERAPY DEVELOPMENT FOR THIS COMPLEX NEUROLOGICAL DISEASE. THE COLLABORATIVE PROVIDES A CENTRALIZED SOURCE FOR ACCESS TO RESOURCES NEEDED TO SUPPORT RESEARCH AND DEVELOPMENT OF ATAXIA THERAPIES. MEMBERS WILL BENEFIT FROM THE INTEGRATION OF THE PATIENT EXPERIENCE WITH SOUND ATAXIA SCIENTIFIC AND CLINICAL EXPERTISE. NAF BRINGS MORE THAN 60 YEARS OF EXPERIENCE IN SUPPORTING PATIENTS AND CAREGIVERS AND CONNECTING THEM WITH RESEARCH AND CLINICAL TRIAL OPPORTUNITIES. NAF HAS ALSO FUNDED A NETWORK OF ATAXIA CLINICIANS AT SITES AROUND THE US THAT WILL BE A CRITICAL COMPONENT OF THE COLLABORATIVE'S WORK. SPECIFIC OBJECTIVES OF THE COLLABORATIVE INCLUDE NATURAL HISTORY AND BIO SAMPLE DATA COLLECTION, DEVELOPMENT OF BIOMARKERS, VALIDATION OF RATING SCALES, CLINICAL TRIAL DESIGN, PATIENT-REPORTED OUTCOMES, AND OTHER DATA NECESSARY FOR THE DEVELOPMENT AND APPROVAL OF SAFE AND EFFECTIVE THERAPIES. THERE WERE TEN MEMBERS OF THE COLLABORATIVE AT THE END OF 2021.