CREUTZFELDT-JAKOB DISEASE FOUNDATION INC

As filed

Subsection

03

Classification

1200

Street

3634 W MARKET ST STE 110 # S

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2024

• THE CJD FOUNDATION'S NATIONWIDE FAMILY SUPPORT PROGRAMS INCLUDE: HELPLINE SUPPORT AND RESOURCES, FAMILY CONFERENCE, FAMILY WORKSHOPS, MONTHLY VIRTUAL SUPPORT GROUPS, SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, CAREGIVER SUPPORT GROUPS, AND REFERRALS TO THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD (TAPCJD). THE CJD FOUNDATION PROVIDES FUNDING AND REFERRALS FOR TAPCJD AND OFFERS GUIDANCE, EDUCATION, AND SUPPORT TO FAMILIES AFFECTED BY PRION DISEASE, WHILE COLLECTING NATURAL HISTORY DATA THAT CAN BE USED FOR A VARIETY OF RESEARCH PURPOSES.HELPLINE SUPPORT: THE CJD FOUNDATION RESPONDED TO 2,563 CALLS AND EMAILS IN 2024, PROVIDING INFORMATION AND REFERRALS AND RESPONDING TO QUESTIONS AND CONCERNS FROM FAMILY MEMBERS, (CONTINUED ON SCHEDULE O)MEDICAL PROFESSIONALS, FUNERAL DIRECTORS, AND INFECTION CONTROL SPECIALISTS. WE SENT CAREGIVING BINDERS TO MORE THAN 174 FAMILIES AND HOSPICE PROVIDERS. AT OUR 2024 CJD FOUNDATION FAMILY CONFERENCE, A TOTAL OF 155 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS ATTENDED. CONFERENCE SESSIONS INCLUDED AN UPDATE FROM THE CENTERS FOR DISEASE CONTROL AND PREVENTION, RESEARCH UPDATES, AND INFORMATION ON SURVEILLANCE, TREATMENT, AND EARLY DIAGNOSIS OF CJD.SUPPORT GROUPS, WEBINARS AND SPEAKER SERIES: WE HOSTED 43 TELECONFERENCE SUPPORT GROUPS IN 2024. THESE CALLS ALLOW CONSTITUENTS WHO CANNOT ATTEND IN-PERSON EVENTS TO ACCESS AN EXPERT AND ADDRESS THEIR QUESTIONS AND CONCERNS. INTERVIEWS WITH PRION DISEASE EXPERTS WERE RECORDED AND POSTED TO THE CJD FOUNDATION WEBSITE.

  Expenses $503,902

• IN 2024, THE CJD FOUNDATION AWARDED $702,920 IN GRANTS TO 8 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 50 RESEARCHERS WORLDWIDE APPLIED. GRANT RECIPIENTS PRESENT THEIR RESEARCH AT THE CJD FOUNDATION'S ANNUAL FAMILY CONFERENCE. THE CJD FOUNDATION HAS AWARDED MORE THAN 94 RESEARCH GRANTS SINCE 2006, FUNDING A NUMBER OF GROUNDBREAKING PROJECTS THAT HAVE LED TO IMPORTANT NEW DISCOVERIES. FUNDING COMES FROM FAMILY MEMORIAL RESEARCH GRANTS AND FROM THE FUNDRAISING ACTIVITIES OF THE CJD FOUNDATION.

  Expenses $1,007,819 · Grants $702,920

• THE CJD FOUNDATION HOSTS GRAND ROUND PRESENTATIONS, INFECTION CONTROL SEMINARS, AND FUNERAL EDUCATION AROUND THE COUNTRY, AT NO CHARGE. OUR MEDICAL EDUCATION PROGRAMS ARE INSTRUCTED BY PRION DISEASE EXPERTS. IN 2024, WE PROVIDED MEDICAL EDUCATION:MEDICAL EDUCATION NEUROLOGY GRAND ROUNDS WERE HELD IN: - TEXAS AT DSHS, WHICH INCLUDES STAFF FROM DSHS, HEALTH AND HUMAN SERVICES COMMISSION, LOCAL HEALTH DEPARTMENTS, LOCAL MENTAL HEALTH CENTERS, HOSPITALS, INSTITUTIONS OF HIGHER EDUCATION, AND OTHERS THROUGHOUT TEXAS. - IMED/SALT LAKE VALLEY NEUROLOGY DEPARTMENT (CONTINUED ON SCHEDULE O)- BAYSTATE UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL- CAPE COD FALMOUTH HOSPITAL IN FALMOUTH, MA.FUNERAL EDUCATION PRESENATIONS WERE HELD IN:- INDIANAPOLIS, INDIANAWE ALSO RESPONDED TO REQUESTS FOR INFORMATION FROM 70 MEDICAL PROFESSIONALS VIA OUR HELPLINE, AND MADE INFORMATION AVAILABLE TO MEDICAL, INFECTIOUS DISEASE, HOSPICE AND GENETIC COUNSELING PROFESSIONALS THROUGH OUR WEBSITE, EDUCATIONAL BINDERS, AND ANNUAL CONFERENCE WHICH IS RECORDED AND POSTED ON OUR WEBSITE.

  Expenses $41,571

• ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS

  Expenses $46,831

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. Earlier years are each on their own filing page.

Filings

• 2024

  Revenue

  $2,870,657

  Expenses

  $1,865,950

  Contributions

  $2,463,713

  Grants paid

  $702,920

• 2023

  Revenue

  $2,943,480

  Expenses

  $1,541,598

  Contributions

  $2,770,443

  Grants paid

  $718,205

• 2022

  Revenue

  $2,861,917

  Expenses

  $1,274,442

  Contributions

  $2,735,803

  Grants paid

  $651,433

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

• 2021 · 990

  Revenue

  $2,551,633

  Expenses

  $1,152,582

  Assets (EOY)

  $5,032,702

• 2020 · 990

  Revenue

  $1,767,307

  Expenses

  $1,021,636

  Assets (EOY)

  $3,622,436

• 2019 · 990

  Revenue

  $1,669,970

  Expenses

  $963,069

  Assets (EOY)

  $2,749,540

• 2018 · 990

  Revenue

  $1,598,240

  Expenses

  $874,748

  Assets (EOY)

  $2,020,582

• 2017 · 990

  Revenue

  $1,032,773

  Expenses

  $762,761

  Assets (EOY)

  $1,312,484

• 2016 · 990

  Revenue

  $1,042,363

  Expenses

  $816,085

  Assets (EOY)

  $1,045,907

• 2015 · 990

  Revenue

  $727,856

  Expenses

  $819,217

  Assets (EOY)

  $807,485

• 2014 · 990

  Revenue

  $684,311

  Expenses

  $587,158

  Assets (EOY)

  $891,868

• 2013 · 990

  Revenue

  $680,630

  Expenses

  $666,029

  Assets (EOY)

  $798,230

• 2012 · 990

  Revenue

  — not reported

  Expenses

  $474,941

  Assets (EOY)

  $806,446

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

• CASE WESTERN RESERVE

  $150,000

  2023 · RESEARCH

• CASE WESTERN RESERVE

  $100,000

  2024 · RESEARCH

• NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES

  $100,000

  2024 · RESEARCH

• CREIGHTON UNIVERSITY

  $100,000

  2023 · RESEARCH

• BOSTON UNIVERSITY

  $100,000

  2023 · RESEARCH

• CASE WESTERN RESERVE

  $100,000

  2022 · RESEARCH

• UNIVERSITY OF TEXAS

  $100,000

  2022 · RESEARCH

• NATIONAL INSTITUTES OF HEALTH

  $47,115

  2022 · RESEARCH

Where these grants went next →

Grants received

• JEWISH COMMUNITY FDN OF THE JEWISH FEDERATION COUNCIL OF GREATER LA

  $100,000

  2024 · general support

• JEWISH COMMUNITY FDN OF THE JEWISH FEDERATION COUNCIL OF GREATER LA

  $100,000

  2023 · GENERAL SUPPORT

• THRIVENT CHARITABLE IMPACT & INVESTING

  $74,753

  2022 · GENERAL SUPPORT

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $60,307

  2024 · For grant recipient's exempt purposes

• PAYPAL CHARITABLE GIVING FUND

  $58,310

  2024 · GENERAL SUPPORT

• AMERICAN ONLINE GIVING FOUNDATION INC

  $51,051

  2024 · GENERAL SUPPORT

• PAYPAL CHARITABLE GIVING FUND

  $42,945

  2022 · GENERAL SUPPORT

• DONOR ADVISED CHARITABLE GIVING

  $35,630

  2022 · PUBLIC, SOCIETAL BENEFIT

• AMERICAN ONLINE GIVING FOUNDATION INC

  $31,523

  2022 · GENERAL SUPPORT

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $31,023

  2023 · For grant recipient's exempt purposes

The 10 largest by cash amount. The API serves every itemized grant.

Other IRS files