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        <Desc>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.</Desc>
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        <Desc>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.</Desc>
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        <PersonNm>LAWRENCE LEVIEN</PersonNm>
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        <PersonNm>LAWRENCE GOLBE</PersonNm>
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        <PersonNm>WILLIAM MCFARLAND</PersonNm>
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        <PersonNm>JAMES MCCLELLAN</PersonNm>
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        <PersonNm>MANA BHATT SANGHVI</PersonNm>
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        <PersonNm>RICHARD T SPAIN IV</PersonNm>
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          <BusinessNameLine1Txt>UNIVERSITY RESEARCH ADMINISTRATION - UNIV OF CHICAGO</BusinessNameLine1Txt>
        </RecipientBusinessName>
        <USAddress>
          <AddressLine1Txt>6054 SOUTH DREXEL AVENUE SUITE 300</AddressLine1Txt>
          <CityNm>CHICAGO</CityNm>
          <StateAbbreviationCd>IL</StateAbbreviationCd>
          <ZIPCd>60637</ZIPCd>
        </USAddress>
        <RecipientEIN>362177139</RecipientEIN>
        <IRCSectionDesc>501 (C) (3)</IRCSectionDesc>
        <CashGrantAmt>40000</CashGrantAmt>
        <NonCashAssistanceAmt>0</NonCashAssistanceAmt>
        <PurposeOfGrantTxt>FY25 CENTER OF CARE AWARD GRANT</PurposeOfGrantTxt>
      </RecipientTable>
      <RecipientTable>
        <RecipientBusinessName>
          <BusinessNameLine1Txt>THE MICHAEL J FOX FOUNDATION</BusinessNameLine1Txt>
        </RecipientBusinessName>
        <USAddress>
          <AddressLine1Txt>111 WEST 33RD STREET 10TH FLOOR</AddressLine1Txt>
          <CityNm>NEW YORK</CityNm>
          <StateAbbreviationCd>NY</StateAbbreviationCd>
          <ZIPCd>10001</ZIPCd>
        </USAddress>
        <RecipientEIN>134141945</RecipientEIN>
        <IRCSectionDesc>501 (C) (3)</IRCSectionDesc>
        <CashGrantAmt>30000</CashGrantAmt>
        <NonCashAssistanceAmt>0</NonCashAssistanceAmt>
        <PurposeOfGrantTxt>SPECIAL INITIATIVE GRANT: SPONSORSHIP OF THE ECONOMIC BURDEN REPORT</PurposeOfGrantTxt>
      </RecipientTable>
      <RecipientTable>
        <RecipientBusinessName>
          <BusinessNameLine1Txt>FOUNDATION FOR THE NATIONAL INSTITUTES OF HEALTH</BusinessNameLine1Txt>
        </RecipientBusinessName>
        <USAddress>
          <AddressLine1Txt>11400 ROCKVILLE PIKE SUITE 600</AddressLine1Txt>
          <CityNm>NORTH BETHESDA</CityNm>
          <StateAbbreviationCd>MD</StateAbbreviationCd>
          <ZIPCd>20852</ZIPCd>
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        <RecipientEIN>521986675</RecipientEIN>
        <IRCSectionDesc>501 (C) (3)</IRCSectionDesc>
        <CashGrantAmt>25000</CashGrantAmt>
        <NonCashAssistanceAmt>0</NonCashAssistanceAmt>
        <PurposeOfGrantTxt>SPECIAL INITIATIVE GRANT: PARTNERSHIP WITH FNIH - AMP PDRD INITIATIVE</PurposeOfGrantTxt>
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      <RecipientTable>
        <RecipientBusinessName>
          <BusinessNameLine1Txt>UNIVERSITY OF TEXAS AT SAN ANTONIO</BusinessNameLine1Txt>
        </RecipientBusinessName>
        <USAddress>
          <AddressLine1Txt>ONE UTSA CIRCLE GIFT SERVICES</AddressLine1Txt>
          <CityNm>SAN ANTONIO</CityNm>
          <StateAbbreviationCd>TX</StateAbbreviationCd>
          <ZIPCd>78249</ZIPCd>
        </USAddress>
        <RecipientEIN>741717115</RecipientEIN>
        <IRCSectionDesc>501 (C) (3)</IRCSectionDesc>
        <CashGrantAmt>10000</CashGrantAmt>
        <NonCashAssistanceAmt>0</NonCashAssistanceAmt>
        <PurposeOfGrantTxt>STUDENT FELLOWSHIP GRANTS - CURE PILLAR OF OUR MISSION</PurposeOfGrantTxt>
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      <RecipientTable>
        <RecipientBusinessName>
          <BusinessNameLine1Txt>FASEB</BusinessNameLine1Txt>
        </RecipientBusinessName>
        <USAddress>
          <AddressLine1Txt>6120 EXECUTIVE BLVD SUITE 230</AddressLine1Txt>
          <CityNm>ROCKVILLE</CityNm>
          <StateAbbreviationCd>MD</StateAbbreviationCd>
          <ZIPCd>20852</ZIPCd>
        </USAddress>
        <RecipientEIN>520700497</RecipientEIN>
        <IRCSectionDesc>501 (C) (3)</IRCSectionDesc>
        <CashGrantAmt>6000</CashGrantAmt>
        <NonCashAssistanceAmt>0</NonCashAssistanceAmt>
        <PurposeOfGrantTxt>SPONSORSHIP AT FASEB MEETING</PurposeOfGrantTxt>
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      <RecipientTable>
        <RecipientBusinessName>
          <BusinessNameLine1Txt>SJO RESEARCH &amp; CONSULTING</BusinessNameLine1Txt>
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        <USAddress>
          <AddressLine1Txt>205 COUNTRY LANE</AddressLine1Txt>
          <CityNm>PHOENIXVILLE</CityNm>
          <StateAbbreviationCd>PA</StateAbbreviationCd>
          <ZIPCd>19460</ZIPCd>
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        <RecipientEIN>451290156</RecipientEIN>
        <IRCSectionDesc>501 (C) (3)</IRCSectionDesc>
        <CashGrantAmt>54474</CashGrantAmt>
        <NonCashAssistanceAmt>0</NonCashAssistanceAmt>
        <PurposeOfGrantTxt>RESEARCH GRANT</PurposeOfGrantTxt>
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      <TotalOtherOrgCnt>1</TotalOtherOrgCnt>
      <GrantsOtherAsstToIndivInUSGrp>
        <GrantTypeTxt>BRAIN TISSUE GRANTS</GrantTypeTxt>
        <RecipientCnt>38</RecipientCnt>
        <CashGrantAmt>36192</CashGrantAmt>
      </GrantsOtherAsstToIndivInUSGrp>
      <GrantsOtherAsstToIndivInUSGrp>
        <GrantTypeTxt>RESPITE CARE FUND</GrantTypeTxt>
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        <CashGrantAmt>219451</CashGrantAmt>
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      <SupplementalInformationDetail>
        <FormAndLineReferenceDesc>PART I, LINE 2:</FormAndLineReferenceDesc>
        <ExplanationTxt>INVESTIGATORS ARE REQUIRED TO PROVIDE TWO PROGRESS REPORTS DURING THE TERM OF THE GRANT. THE PROGRESS REPORT IS SENT FOR REVIEW AND APPROVAL TO THE VICE PRESIDENT OF SCIENTIFIC AFFAIRS AND PAYMENT MAY BE RELEASED ONLY AFTER APPROVAL HAS BEEN GIVEN. IF PROGRESS REPORTS ARE NOT DETERMINED TO BE SATISFACTORY, PAYMENT MAY BE WITHHELD UNTIL THE INVESTIGATOR CAN PROVIDE A SATISFACTORY REPORT.</ExplanationTxt>
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        <PersonNm>RICHARD T SPAIN IV</PersonNm>
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    <IRS990ScheduleO documentId="RetDoc1044400001">
      <SupplementalInformationDetail>
        <FormAndLineReferenceDesc>FORM 990, PART VI, SECTION A, LINE 2</FormAndLineReferenceDesc>
        <ExplanationTxt>WILLIAM R. MCFARLAND AND ILEEN J MCFARLAND ARE HUSBAND AND WIFE.</ExplanationTxt>
      </SupplementalInformationDetail>
      <SupplementalInformationDetail>
        <FormAndLineReferenceDesc>FORM 990, PART VI, SECTION B, LINE 11B</FormAndLineReferenceDesc>
        <ExplanationTxt>THE 990 IS PROVIDED TO THE FINANCE COMMITTEE FOR REVIEW AND APPROVAL. THE FORM IS THEN PROVIDED TO THE FULL BOARD OF DIRECTORS FOR A PERIOD TO MAKE COMMENTS BEFORE FILING WITH THE IRS.</ExplanationTxt>
      </SupplementalInformationDetail>
      <SupplementalInformationDetail>
        <FormAndLineReferenceDesc>FORM 990, PART VI, SECTION B, LINE 12C</FormAndLineReferenceDesc>
        <ExplanationTxt>THE ORGANIZATION HAS A BOARD APPROVED CONFLICTS OF INTEREST POLICY. EACH BOARD MEMBER MUST FILL OUT AN ANNUAL DECLARATION STATING THEY HAD NO CONFLICTS OR IDENTIFYING THE NATURE OF THEIR INTERESTED PARTY TRANSACTIONS.</ExplanationTxt>
      </SupplementalInformationDetail>
      <SupplementalInformationDetail>
        <FormAndLineReferenceDesc>FORM 990, PART VI, SECTION B, LINE 15A</FormAndLineReferenceDesc>
        <ExplanationTxt>THE BOARD OF DIRECTORS DISCUSSED PERFORMANCE AND USES SALARY DATA TO DETERMINE. PERIODICALLY THE BOARD ALSO OBTAINS AN INDEPENDENT COMPENSATION STUDY TO DETERMINE SALARY LEVELS.</ExplanationTxt>
      </SupplementalInformationDetail>
      <SupplementalInformationDetail>
        <FormAndLineReferenceDesc>FORM 990, PART VI, SECTION C, LINE 19</FormAndLineReferenceDesc>
        <ExplanationTxt>GOVERNING DOCUMENTS ARE MADE AVAILABLE UPON REQUEST.</ExplanationTxt>
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