CUREPSP INC

THE PREVALENCE OF PROGRESSIVE SUPRANUCLEAR PALSY (PSP) IS COMPARABLE TO THAT OF ALS (AMYOTROPHIC LATERAL SCLEROSIS), YET PSP, ALONG WITH CORTICOBASAL DEGENERATION (CBD) AND MULTIPLE SYSTEM ATROPHY (MSA), REMAINS SIGNIFICANTLY UNDERRECOGNIZED COMPARED TO ALS. CUREPSP IS DEDICATED TO RAISING AWARENESS FOR THESE CONDITIONS AND SUPPORTING THE PATIENTS, FAMILIES, AND CAREGIVERS AFFECTED BY THEM, EMPOWERING THEM TO ADVOCATE EFFECTIVELY FOR THEIR NEEDS. THE ORGANIZATION IS COMMITTED TO ENHANCING QUALITY OF LIFE AND PATIENT OUTCOMES BY BUILDING A RESILIENT AND SUPPORTIVE COMMUNITY THAT GROW AWARENESS NATIONALLY AND GLOBALLY. CONTINUED ON SCHEDULE OCUREPSP PURSUES THESE GOALS THROUGH VOLUNTEER DEVELOPMENT PROGRAMS, PROFESSIONAL EDUCATION, AND THE DISTRIBUTION OF EDUCATIONAL RESOURCES BOTH ONLINE AND IN PRINT FOR THE PUBLIC AND HEALTHCARE PROFESSIONALS. ADDITIONALLY, IT ACTIVELY SHARES VITAL INFORMATION THROUGH SOCIAL MEDIA AND ONLINE NEWSLETTERS. CUREPSP ENGAGES IN ADVOCACY TO ADVANCE PUBLIC POLICIES THAT IMPROVE CARE, SUPPORT RESEARCH, AND INCREASE AWARENESS. THE ORGANIZATION MOBILIZES PATIENTS, CARE PARTNERS, AND VOLUNTEERS TO PARTICIPATE IN LEGISLATIVE OUTREACH, EDUCATES POLICYMAKERS ABOUT THE NEEDS OF THE COMMUNITY, AND COLLABORATES WITH NATIONAL ADVOCACY COALITIONS TO PROMOTE POLICIES THAT EXPAND ACCESS TO CARE, SUPPORT FAMILY CARE PARTNERS, IMPROVE DIAGNOSTICS, AND INCREASE FEDERAL INVESTMENT IN RESEARCH. THROUGH THESE EFFORTS, CUREPSP HAS HELPED ADVANCE FEDERAL AND STATE POLICY INITIATIVES RELATED TO TELEHEALTH ACCESS, COORDINATED NATIONAL STRATEGIES FOR PARKINSONIAN DISEASES, AND INCREASED RECOGNITION OF THESE CONDITIONS WITHIN FEDERAL RESEARCH PRIORITIES.

CUREPSP PUBLISHES A LIBRARY OF PRINTED AND ONLINE EDUCATIONAL MATERIALS FOR FAMILIES, PATIENTS, PHYSICIANS, AND OTHER HEALTHCARE PROFESSIONALS. THESE MATERIALS ARE DEVELOPED IN COLLABORATION WITH CUREPSP CENTERS OF CARE, A NETWORK OF HOSPITALS AND BEST-IN-CLASS ACADEMIC CENTERS SPECIALIZING IN TREATING PATIENTS WITH PSP, CBD, AND MSA. CUREPSP SPONSORS EDUCATIONAL CONFERENCES IN COLLABORATION WITH LEADING INSTITUTIONS TO INCREASE KNOWLEDGE AND SUPPORT PEOPLE LIVING WITH THESE FATAL DISEASES. THE OBJECTIVE IS TO PROMOTE EDUCATION, EARLIER AND MORE ACCURATE DIAGNOSIS AND BETTER PATIENT CARE. SEVERAL DOZEN VOLUNTEER EVENTS ANNUALLY, SUPPORTED BY CUREPSP, FURTHER EDUCATE, AND EMPOWER OUR COMMUNITY TO PREPARE FOR THEIR CARE NEEDS. (CONTINUE ON SCHEDULE O)CUREPSP UTILIZES SOCIAL MEDIA, ONLINE PLATFORMS, AND EDUCATIONAL PROGRAMMING TO COMMUNICATE WITH AND SUPPORT PATIENTS, CARE PARTNERS, AND HEALTHCARE PROFESSIONALS. THE ORGANIZATION MAINTAINS AN ONLINE PATIENT AND CAREGIVER FORUM, PRODUCES NATIONAL WEBINARS AND EDUCATIONAL PRESENTATIONS FROM CLINICIANS AND RESEARCHERS, AND HOSTS "ASK THE EXPERTS" INTERACTIVE SESSIONS. CUREPSP ALSO ORGANIZES ONLINE SUPPORT GROUPS, ANNUAL WELLNESS WORKSHOPS, AND AN IN-PERSON COMMUNITY GATHERING TO HELP INDIVIDUALS MANAGE DISEASE BURDEN AND THE CHALLENGES OF CAREGIVING. THROUGH THE CUREPSP QUALITY OF LIFE RESPITE GRANT PROGRAM, SUPPORTED BY THE CHERIE LEVIEN QUALITY OF LIFE FUND AND OTHER DONORS, THE ORGANIZATION PROVIDES FINANCIAL ASSISTANCE TO HELP FAMILIES ACCESS PROFESSIONAL IN-HOME CARE. CUREPSP SUPPORTS MORE THAN 50 VIRTUAL AND IN-PERSON SUPPORT GROUPS AND LEVERAGES A GLOBAL NETWORK OF MORE THAN 350 VOLUNTEERS TO PROVIDE ONLINE, TELEPHONE, AND FACE-TO-FACE SUPPORT.CUREPSP ESTABLISHED THE CUREPSP CENTERS OF CARE NETWORK IN 2017 TO IMPROVE ACCESS TO HIGH-QUALITY, SPECIALIZED CLINICAL CARE. MEDICAL CENTERS ARE DESIGNATED BASED ON CRITERIA INCLUDING EXPERTISE IN DIAGNOSIS AND MANAGEMENT, AVAILABILITY OF MULTIDISCIPLINARY CARE AND SUPPORT SERVICES, AND PARTICIPATION IN CLINICAL RESEARCH. THROUGH THIS NETWORK, CUREPSP COLLABORATES WITH LEADING MEDICAL CENTERS TO PROMOTE EARLIER DIAGNOSIS, ADVANCE BEST PRACTICES IN CARE, EXPAND ACCESS TO SPECIALIZED SERVICES, AND SUPPORT CLINICAL RESEARCH. THE NETWORK NOW INCLUDES CENTERS IN THE UNITED STATES AND CANADA, WITH ADDITIONAL CENTERS PLANNED IN EUROPE.