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    3. Amyotrophic Lateral Sclerosis Assn
    Amyotrophic Lateral Sclerosis Assn logo

    Amyotrophic Lateral Sclerosis Assn

    ActivePublic CharityDiseases & Disorders
    ARLINGTON, VAWebsiteEIN: 13-32718552 filings on record

    About Amyotrophic Lateral Sclerosis Assn

    To lead the fight to treat and cure ALS through research, patient care and support, and advocacy.

    Focus Areas

    ALS researchDrug development / translational researchClinical fellowships and seed grantsPatient care and support servicesAdvocacy and policy

    Who They Fund

    clinical researchers and investigators (including postdoctoral fellows)research institutions and centers (centers of excellence, trial sites)clinical trial infrastructure / trial sitespatients implicitly served by trials and quality-of-care programs (disease-affected populations)industry or contract partners involved in drug development

    Funding Style

    About Amyotrophic Lateral Sclerosis Assn

    Amyotrophic Lateral Sclerosis Assn directs large-scale funding toward ALS research, patient care, support services, and advocacy, with a strong emphasis on moving work into clinical use. In the recent grants list, that shows up in a $750,000 clinical trial award to Projenx Inc and a $600,000 trial-capacity and clinical trial award to University of Kansas Medical Center Research Institute Inc. The pattern is not limited to trials: the organization also funded drug-development contracts, prevention work, quality-of-care projects, and fellowships, reflecting a program mix that reaches from early-stage science to care delivery. Its largest awards in the data include multi-hundred-thousand-dollar commitments to universities, hospitals, research institutes, and biotech companies. The grants also point to a portfolio that includes strategic initiatives and partnership programs alongside project-specific research awards. Recipients range from academic medical centers such as University of Massachusetts Medical School and Massachusetts General Hospital - Research to industry groups such as Aquilus Pharmaceuticals Inc and Libra Therapeutics, showing that the funder backs both institutional research infrastructure and translational development. This is a public charity with national reach and a research-forward funding model built around ALS-specific projects.

    What Amyotrophic Lateral Sclerosis Assn Funds

    The clearest theme is translational and clinical ALS research. The foundation gave $500,000 to Aquilus Pharmaceuticals Inc for a clinical trial award and $300,000 to Libra Therapeutics for a drug development contract, both aimed at advancing therapies toward patient use. It also supported Myrobalan Therapeutics Inc with a $250,000 drug development contract. A second strand is prevention and early intervention. Regents of the University of Michigan received $349,864 tied in part to a prevention program, while The Trustees of Columbia University in the City of New York received $349,286 with prevention-program support and other research components. The third area is quality and care delivery. Mayo Clinic Arizona received a $400,000 award that included quality-of-care programming, and The Regents of the University of California San Francisco received $250,000 for a quality-of-care program. These awards sit alongside trial-capacity support, showing that the foundation funds both therapeutic development and the systems needed to deliver ALS care and research.

    How Amyotrophic Lateral Sclerosis Assn Gives

    Financial Snapshot

    Annual Giving

    $15.1M

    Total Assets

    $127.9M

    Total Revenue

    $126.5M

    Total Expenses

    $98.8M

    Typical Grant Size

    Most grants fall between $25K and $75K, with a median of $38K.

    25th Percentile

    $25K

    Median

    $38K

    75th Percentile

    $75K

    Geographic Reach

    National41 states funded

    About 1% of grants go to recipients in NY.

    Funding intensity
    Low
    High
    Headquarters

    Deep Analysis

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    See If You're a Fit — FreeFree account · instant fit score · similar funders
    research and clinical infrastructure fundingproject-based / restricted awards (e.g., clinical trial awards, drug development contracts)capacity building (trial capacity program, center of excellence)career development & training support (postdoctoral fellowships, clinical research training)multi-modal grantmaking (seed grants, annual/quarterly operating grants, partnerships)

    Topics

    clinical trial development and expansiondrug development / translational therapeuticsprevention programs and quality-of-care improvementassistive technology development and deploymentresearch center / center-of-excellence supportseed funding for early-stage projectspartnerships and strategic initiatives for programmatic scale

    Typical grant size centers in the tens of thousands, with a p25 of $25,000, a median of $37,500, and a p75 of $75,000. The recent-grants file also shows much larger project awards, including several $300,000 to $750,000 commitments. The organization appears to use a multi-modal structure: project-based awards, strategic initiatives, partnership grants, trial-capacity funding, fellowship support, and annual or quarterly grant payments. Recipients recur across program types and years, including University of Miami and University of Florida, which suggests ongoing relationships rather than one-off awards. The foundation is a public charity, funds individuals as false, and does not make program-related investments. Some programs accept unsolicited applications, including Seed Grants and Prevention Grants, while other targeted initiatives are selected rather than open-call awards.

    Where Amyotrophic Lateral Sclerosis Assn Makes Grants

    Grantmaking is national, and every recipient in the country distribution is in the United States. The top state by grant count is New York, which aligns with multiple New York City recipients in the recent-grants list. Other frequent recipient hubs include Boston, Gainesville, and Miami, along with Kansas City and Baltimore. Recent awards also land in other major research centers such as Los Angeles, Ann Arbor, Jacksonville, Scottsdale, and Houston. Virginia appears in the data through Charlottesville and Arlington-area organizations, but only 1% of grants go to recipients in the HQ state of Virginia, so the giving footprint is much broader than the headquarters location.

    Frequently Asked Questions About Amyotrophic Lateral Sclerosis Assn

    What kinds of ALS work does Amyotrophic Lateral Sclerosis Assn fund?

    The portfolio covers ALS research, drug development and translational therapeutics, clinical fellowships and seed grants, patient care and support services, and advocacy. Recent awards also include trial-capacity support, prevention programming, quality-of-care work, and assistive technology.

    What is the typical grant size?

    The typical award sits in the tens of thousands: p25 is $25,000, the median is $37,500, and p75 is $75,000. The recent grants file also includes much larger project awards, reaching $750,000.

    Does the foundation fund clinical trials and drug development?

    Yes. Recent grants include a $750,000 clinical trial award to Projenx Inc, a $300,000 drug development contract to The Brigham and Women's Hospital Inc, and a $250,000 drug development contract to Myrobalan Therapeutics Inc.

    What does the foundation support beyond research?

    It funds patient-facing and system-level work as well. Recent grants include quality-of-care programming, trial-capacity support, annual and quarterly grant payments tied to centers of excellence or research, and assistive technology.

    How broad is the geographic reach of the grants?

    The grant portfolio is national, with 378 grants going to U.S. recipients and 100% of the recipient-country distribution in the United States. New York is the top state by grant count, while only 1% of grants go to recipients in Virginia.

    Latest 990 Filing

    2024

    Source: IRS Form 990-PF, fiscal year 2024.

    Recent Grants

    Most recent grants reported to the IRS.

    RecipientLocationAmountYearPurpose
    PROJENX INCNEW YORK, NY$750,0002024CLINICAL TRIAL AWARD
    UNIVERSITY OF KANSAS MEDICAL CENTER RESEARCH INSTITUTE INCKANSAS CITY, KS$600,0002024TRIAL CAPACITY PROGRAM; CLINICAL TRIAL AWARD
    AQUILUS PHARMACEUTICALS INCWINCHESTER, MA$500,0002024CLINICAL TRIAL AWARD
    UNIVERSITY OF MIAMIMIAMI, FL$454,7402024ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH; BITNER PLANTE QUARTERLY GRANT; ADDITIONAL QUARTERLY GRANT FUNDING
    MAYO CLINIC ARIZONASCOTTSDALE, AZ$400,0002024SEED GRANTS PROGRAM; TRIAL CAPACITY PROGRAM; QUALITY OF CARE PROGRAM
    UNIVERSITY OF FLORIDAGAINESVILLE, FL$390,4132024CLINICAL TRIAL AWARD
    BAYLOR COLLEGE OF MEDICINEHOUSTON, TX$350,0002024TRIAL CAPACITY PROGRAM; QUALITY OF CARE PROGRAM
    REGENTS OF THE UNIVERSITY OF MICHIGANANN ARBOR, MI$349,8642024SEED GRANTS PROGRAM; TRIAL CAPACITY PROGRAM; PREVENTION PROGRAM; INVESTIGATOR INITIATED AWARD MULTI YEAR
    THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORKNEW YORK, NY$349,2862024PREVENTION PROGRAM; TRIAL CAPACITY PROGRAM; INVESTIGATOR INITIATED AWARD MULTI YEAR; POST DOCTORAL FELLOWSHIP
    UNIVERSITY OF MIAMIATLANTA, GA$343,9432024PREVENTION PROGRAM
    MAYO CLINIC FLORIDAJACKSONVILLE, FL$341,0092024ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH; BITNER PLANTE QUARTERLY GRANT
    UNIVERSITY MEDICAL SERVICE ASSOCIATION INCORLANDO, FL$322,3652024BITNER PLANTE QUARTERLY GRANT
    JOHNS HOPKINS UNIVERSITYBALTIMORE, MD$310,3512024STRATEGIC INITIATIVE; TRIAL CAPACITY PROGRAM
    CURATORS OF THE UNIVERSITY OF MISSOURICOLUMBIA, MO$300,0002024TRIAL CAPACITY PROGRAM; ASSISTIVE TECHNOLOGY
    THE BRIGHAM AND WOMEN'S HOSPITAL INCBOSTON, MA$300,0002024DRUG DEVELOPMENT CONTRACT
    AMERICAN BRAIN FOUNDATIONMINNEAPOLIS, MN$267,0002024SHELIA ESSEY AWARD; CLINICAL RESEARCH TRAINING FELLOWSHIP; CLINICAL SCIENTIST DEVELOPMENT AWARD; CRTS
    GEORGETOWN UNIVERSITYPHILADELPHIA, PA$250,0002024QUALITY OF CARE PROGRAM
    MYROBALAN THERAPEUTICS INCMEDFORD, MA$250,0002024DRUG DEVELOPMENT CONTRACT
    THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN FRANCISCOLOS ANGELES, CA$250,0002024QUALITY OF CARE PROGRAM
    SAMSARA THERAPEUTICS INCLEWES, DE$250,0002024DRUG DEVELOPMENT CONTRACT
    RAPA THERAPEUTICS LLCROCKVILLE, MD$250,0002024CLINICAL TRIAL AWARD
    HOLY CROSS HOSPITALFT LAUDERDALE, FL$237,5322024BITNER PLANTE QUARTERLY GRANT
    VANDERBILT UNIVERSITY MEDICAL CENTERNASHVILLE, TN$225,0002024ANNUAL CLINIC FUNDING - TN DOH FUND; ANNUAL GRANT
    REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVISDAVIS, CA$200,0002024ASSISTIVE TECHNOLOGY
    CONTROL BIONICS INCMILFORD, OH$200,0002024ASSISTIVE TECHNOLOGY
    PICASSO INTELLIGENCE LLCFORT LEE, NJ$200,0002024ASSISTIVE TECHNOLOGY
    BRONX VETERANS MEDICAL RESEARCH FOUNDATION INCBRONX, NY$199,8552024TRIAL CAPACITY PROGRAM
    REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGOLA JOLLA, CA$189,6052024POST DOCTORAL FELLOWSHIP
    REGENTS OF THE UNIVERSITY OF COLORADO - BOULDERDENVERDENVER, CO$175,0002024STRATEGIC INITIATIVE
    UNIVERSITY OF TENNESSEE MEDICAL CENTERKNOXVILLE, TN$155,0002024ANNUAL CLINIC FUNDING - TN DOH FUND; ANNUAL GRANT
    NOVA SOUTHEASTERN UNIVERSITYFT LAUDERDALE, FL$150,0002024SEED GRANTS PROGRAM; POST DOCTORAL FELLOWSHIP
    THE RESEARCH FOUNDATION FOR THE STATE UNIVERSITY OF NEW YORKSYRACUSE, NY$150,0002024ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH; ANNUAL GRANT/RESPIRATORY PROGRAM
    STATE UNIVERSITY OF IOWAIOWA CITY, IA$150,0002024ANNUAL GRANT
    BROWN UNIVERSITYPROVIDENCE, RI$150,0002024POST DOCTORAL FELLOWSHIP
    TACONIC BIOSCIENCES INCGERMANTOWN, NY$139,2732024STRATEGIC INITIATIVE
    SEMMES-MURPHEY CLINICMEMPHIS, TN$135,0002024ANNUAL CLINIC FUNDING - TN DOH FUND; ANNUAL GRANT - BRONCZEK FAMILY FUND; ANNUAL GRANT
    THE JOHNS HOPKINS UNIVERSITYCHICAGO, IL$120,0002024QUARTERLY GRANT - MD DOH FUND; KAHLERT QUARTERLY GRANT
    THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIAPHILADELPHIA, PA$103,7482024DRUG DEVELOPMENT CONTRACT; POST DOCTORAL FELLOWSHIP
    UNIVERSITY OF PUERTO RICO MEDICAL SCIENCES CAMPUSSAN JUAN, PR$100,0002024TRIAL CAPACITY PROGRAM
    THE MEDICAL COLLEGE OF WISCONSIN INCMILWAUKEE, WI$100,0002024TRIAL CAPACITY PROGRAM
    THE MASSACHUSETTS GENERAL HOSPITALBOSTON, MA$100,0002024ANNUAL GRANT
    HENRY FORD HEALTH SYSTEMDETROIT, MI$100,0002024TRIAL CAPACITY PROGRAM
    UNIVERSITY OF SOUTHERN CALIFORNIALOS ANGELES, CA$100,0002024DRUG DEVELOPMENT CONTRACT
    LIBRA THERAPEUTICSLA JOLLA, CA$100,0002024DRUG DEVELOPMENT CONTRACT
    SUTTER BAY HOSPITALS DBA CALIFORNIA PACIFIC MEDICAL CENTER RESEARCH INSTITUSAN FRANCISCO, CA$100,0002024TRIAL CAPACITY PROGRAM
    KAISER FOUNDATION RESEARCH INSTITUTEOAKLAND, CA$100,0002024TRIAL CAPACITY PROGRAM
    TEMPLE UNIVERSITY OF THE COMMONWEALTH SYSTEM OF HIGHER EDUCATIONNEW YORK, NY$100,0002024TRIAL CAPACITY PROGRAM
    THE OHIO STATE UNIVERSITYCOLUMBUS, OH$100,0002024TRIAL CAPACITY PROGRAM
    KANSAS UNIVERSITY ENDOWMENT ASSOCIATIONKANSAS CITY, KS$90,0042024ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH; MONTHLY GRANT
    THE REGENTS OF THE UNIVERSITY OF CALIFORNIAORANGE, CA$83,3332024ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH

    PROJENX INC

    $750,000
    NEW YORK, NY2024

    CLINICAL TRIAL AWARD

    UNIVERSITY OF KANSAS MEDICAL CENTER RESEARCH INSTITUTE INC

    $600,000
    KANSAS CITY, KS2024

    TRIAL CAPACITY PROGRAM; CLINICAL TRIAL AWARD

    AQUILUS PHARMACEUTICALS INC

    $500,000
    WINCHESTER, MA2024

    CLINICAL TRIAL AWARD

    UNIVERSITY OF MIAMI

    $454,740
    MIAMI, FL2024

    ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH; BITNER PLANTE QUARTERLY GRANT; ADDITIONAL QUARTERLY GRANT FUNDING

    MAYO CLINIC ARIZONA

    $400,000
    SCOTTSDALE, AZ2024

    SEED GRANTS PROGRAM; TRIAL CAPACITY PROGRAM; QUALITY OF CARE PROGRAM

    UNIVERSITY OF FLORIDA

    $390,413
    GAINESVILLE, FL
    2024

    CLINICAL TRIAL AWARD

    BAYLOR COLLEGE OF MEDICINE

    $350,000
    HOUSTON, TX2024

    TRIAL CAPACITY PROGRAM; QUALITY OF CARE PROGRAM

    REGENTS OF THE UNIVERSITY OF MICHIGAN

    $349,864
    ANN ARBOR, MI2024

    SEED GRANTS PROGRAM; TRIAL CAPACITY PROGRAM; PREVENTION PROGRAM; INVESTIGATOR INITIATED AWARD MULTI YEAR

    THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK

    $349,286
    NEW YORK, NY2024

    PREVENTION PROGRAM; TRIAL CAPACITY PROGRAM; INVESTIGATOR INITIATED AWARD MULTI YEAR; POST DOCTORAL FELLOWSHIP

    UNIVERSITY OF MIAMI

    $343,943
    ATLANTA, GA2024

    PREVENTION PROGRAM

    MAYO CLINIC FLORIDA

    $341,009
    JACKSONVILLE, FL2024

    ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH; BITNER PLANTE QUARTERLY GRANT

    UNIVERSITY MEDICAL SERVICE ASSOCIATION INC

    $322,365
    ORLANDO, FL2024

    BITNER PLANTE QUARTERLY GRANT

    JOHNS HOPKINS UNIVERSITY

    $310,351
    BALTIMORE, MD2024

    STRATEGIC INITIATIVE; TRIAL CAPACITY PROGRAM

    CURATORS OF THE UNIVERSITY OF MISSOURI

    $300,000
    COLUMBIA, MO2024

    TRIAL CAPACITY PROGRAM; ASSISTIVE TECHNOLOGY

    THE BRIGHAM AND WOMEN'S HOSPITAL INC

    $300,000
    BOSTON, MA2024

    DRUG DEVELOPMENT CONTRACT

    AMERICAN BRAIN FOUNDATION

    $267,000
    MINNEAPOLIS, MN2024

    SHELIA ESSEY AWARD; CLINICAL RESEARCH TRAINING FELLOWSHIP; CLINICAL SCIENTIST DEVELOPMENT AWARD; CRTS

    GEORGETOWN UNIVERSITY

    $250,000
    PHILADELPHIA, PA2024

    QUALITY OF CARE PROGRAM

    MYROBALAN THERAPEUTICS INC

    $250,000
    MEDFORD, MA2024

    DRUG DEVELOPMENT CONTRACT

    THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN FRANCISCO

    $250,000
    LOS ANGELES, CA2024

    QUALITY OF CARE PROGRAM

    SAMSARA THERAPEUTICS INC

    $250,000
    LEWES, DE2024

    DRUG DEVELOPMENT CONTRACT

    RAPA THERAPEUTICS LLC

    $250,000
    ROCKVILLE, MD2024

    CLINICAL TRIAL AWARD

    HOLY CROSS HOSPITAL

    $237,532
    FT LAUDERDALE, FL2024

    BITNER PLANTE QUARTERLY GRANT

    VANDERBILT UNIVERSITY MEDICAL CENTER

    $225,000
    NASHVILLE, TN2024

    ANNUAL CLINIC FUNDING - TN DOH FUND; ANNUAL GRANT

    REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS

    $200,000
    DAVIS, CA2024

    ASSISTIVE TECHNOLOGY

    CONTROL BIONICS INC

    $200,000
    MILFORD, OH2024

    ASSISTIVE TECHNOLOGY

    PICASSO INTELLIGENCE LLC

    $200,000
    FORT LEE, NJ2024

    ASSISTIVE TECHNOLOGY

    BRONX VETERANS MEDICAL RESEARCH FOUNDATION INC

    $199,855
    BRONX, NY2024

    TRIAL CAPACITY PROGRAM

    REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO

    $189,605
    LA JOLLA, CA2024

    POST DOCTORAL FELLOWSHIP

    REGENTS OF THE UNIVERSITY OF COLORADO - BOULDERDENVER

    $175,000
    DENVER, CO2024

    STRATEGIC INITIATIVE

    UNIVERSITY OF TENNESSEE MEDICAL CENTER

    $155,000
    KNOXVILLE, TN2024

    ANNUAL CLINIC FUNDING - TN DOH FUND; ANNUAL GRANT

    NOVA SOUTHEASTERN UNIVERSITY

    $150,000
    FT LAUDERDALE, FL2024

    SEED GRANTS PROGRAM; POST DOCTORAL FELLOWSHIP

    THE RESEARCH FOUNDATION FOR THE STATE UNIVERSITY OF NEW YORK

    $150,000
    SYRACUSE, NY2024

    ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH; ANNUAL GRANT/RESPIRATORY PROGRAM

    STATE UNIVERSITY OF IOWA

    $150,000
    IOWA CITY, IA2024

    ANNUAL GRANT

    BROWN UNIVERSITY

    $150,000
    PROVIDENCE, RI2024

    POST DOCTORAL FELLOWSHIP

    TACONIC BIOSCIENCES INC

    $139,273
    GERMANTOWN, NY2024

    STRATEGIC INITIATIVE

    SEMMES-MURPHEY CLINIC

    $135,000
    MEMPHIS, TN2024

    ANNUAL CLINIC FUNDING - TN DOH FUND; ANNUAL GRANT - BRONCZEK FAMILY FUND; ANNUAL GRANT

    THE JOHNS HOPKINS UNIVERSITY

    $120,000
    CHICAGO, IL2024

    QUARTERLY GRANT - MD DOH FUND; KAHLERT QUARTERLY GRANT

    THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA

    $103,748
    PHILADELPHIA, PA2024

    DRUG DEVELOPMENT CONTRACT; POST DOCTORAL FELLOWSHIP

    UNIVERSITY OF PUERTO RICO MEDICAL SCIENCES CAMPUS

    $100,000
    SAN JUAN, PR2024

    TRIAL CAPACITY PROGRAM

    THE MEDICAL COLLEGE OF WISCONSIN INC

    $100,000
    MILWAUKEE, WI2024

    TRIAL CAPACITY PROGRAM

    THE MASSACHUSETTS GENERAL HOSPITAL

    $100,000
    BOSTON, MA2024

    ANNUAL GRANT

    HENRY FORD HEALTH SYSTEM

    $100,000
    DETROIT, MI2024

    TRIAL CAPACITY PROGRAM

    UNIVERSITY OF SOUTHERN CALIFORNIA

    $100,000
    LOS ANGELES, CA2024

    DRUG DEVELOPMENT CONTRACT

    LIBRA THERAPEUTICS

    $100,000
    LA JOLLA, CA2024

    DRUG DEVELOPMENT CONTRACT

    SUTTER BAY HOSPITALS DBA CALIFORNIA PACIFIC MEDICAL CENTER RESEARCH INSTITU

    $100,000
    SAN FRANCISCO, CA2024

    TRIAL CAPACITY PROGRAM

    KAISER FOUNDATION RESEARCH INSTITUTE

    $100,000
    OAKLAND, CA2024

    TRIAL CAPACITY PROGRAM

    TEMPLE UNIVERSITY OF THE COMMONWEALTH SYSTEM OF HIGHER EDUCATION

    $100,000
    NEW YORK, NY2024

    TRIAL CAPACITY PROGRAM

    THE OHIO STATE UNIVERSITY

    $100,000
    COLUMBUS, OH2024

    TRIAL CAPACITY PROGRAM

    KANSAS UNIVERSITY ENDOWMENT ASSOCIATION

    $90,004
    KANSAS CITY, KS2024

    ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH; MONTHLY GRANT

    THE REGENTS OF THE UNIVERSITY OF CALIFORNIA

    $83,333
    ORANGE, CA2024

    ANNUAL GRANT PAYMENT FY24 CENTER OF EXCELLENCE/RESEARCH