Skip to content
Nonprofiteer
← CREUTZFELDT-JAKOB DISEASE FOUNDATION INC

Form 990 for tax year 2023

Filed by CREUTZFELDT-JAKOB DISEASE FOUNDATION INC.

Totals

Total revenue
$2,943,480
Total expenses
$1,541,598
Contributions and grants received
$2,770,443
Grants paid
$718,205
Program service revenue
$41,100
Investment income
$84,302
Other revenue
$47,635
Total assets, end of year
$8,137,536
Total liabilities, end of year
$127,957
Net assets or fund balances, end of year
$8,009,579
Program services expenses (Part IX)
$1,334,035
Management and general expenses
$123,270
Fundraising expenses
$84,293
Program service expenses (Part III)
$1,334,035

Program services were 86.5% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $636,608

  • 1e · Government grants (contributions)

    $74,890

  • 1f · All other contributions, gifts and grants

    $2,058,945

  • 1g · Noncash contributions included above

    $2,002

  • 2a · Program service revenue: CONFERENCE INCOME

    total $41,100 · related or exempt $41,100

  • 3 · Investment income

    total $245,716 · excluded $245,716

  • 7a · Gross sales of assets other than inventory

    securities $2,149,816

  • 7b · Less cost or other basis and sales expenses

    securities $2,311,230

  • 7c · Gain or loss

    securities -$161,414

  • 7d · Net gain or loss

    total -$161,414 · excluded -$161,414

  • 8a · Fundraising events: gross income

    $100,514

  • 8a · Fundraising events: contributions included on line 1c

    $636,608

  • 8b · Fundraising events: direct expenses

    $63,519

  • 8c · Net income from fundraising events

    total $36,995 · excluded $36,995

  • 11a · Other revenue: MISCELLANEOUS

    total $10,640 · excluded $10,640

  • 11e · Other revenue, total

    $10,640

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $350,000 · program services $350,000

  • 3 · Grants to foreign organizations and individuals

    total $368,205 · program services $368,205

  • 5 · Compensation of officers, directors and key employees

    total $111,457 · program services $88,387 · management and general $13,633 · fundraising $9,437

  • 7 · Other salaries and wages

    total $285,291 · program services $226,240 · management and general $34,896 · fundraising $24,155

  • 11c · Fees: accounting

    total $17,594 · management and general $17,594

  • 11g · Fees: other

    total $57,871 · program services $38,287 · management and general $8,082 · fundraising $11,502

  • 13 · Office expenses

    total $19,385 · program services $6,639 · management and general $11,399 · fundraising $1,347

  • 16 · Occupancy

    total $22,663 · program services $18,099 · management and general $2,632 · fundraising $1,932

  • 20 · Interest

    total $194 · management and general $194

  • 22 · Depreciation, depletion and amortization

    total $10,211 · management and general $10,211

  • 23 · Insurance

    total $7,099 · management and general $7,099

  • 24a · Other expenses: FAMILY CONFERENCE

    total $184,883 · program services $184,883

  • 24b · Other expenses: TELENEUROLOGY STUDY

    total $28,000 · program services $28,000

  • 24c · Other expenses: PROGRAM EXPENSE

    total $21,810 · program services $15,302 · fundraising $6,508

  • 24d · Other expenses: DONATION COLLECTION FEES

    total $13,689 · program services $2,186 · fundraising $11,503

  • 24e · All other expenses

    total $43,246 · program services $7,807 · management and general $17,530 · fundraising $17,909

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $439 · end of year $251

  • 2 · Savings and temporary cash investments

    beginning of year $323,687 · end of year $442,999

  • 3 · Pledges and grants receivable

    beginning of year $62,062 · end of year $35,054

  • 4 · Accounts receivable

    beginning of year $14,888 · end of year $20,067

  • 8 · Inventories for sale or use

    beginning of year $7,967 · end of year $7,583

  • 9 · Prepaid expenses and deferred charges

    beginning of year $29,591 · end of year $18,621

  • 10a · Land, buildings and equipment: cost or other basis

    $76,840

  • 10b · Land, buildings and equipment: accumulated depreciation

    $38,771

  • 10c · Land, buildings and equipment, net

    beginning of year $59,471 · end of year $38,069

  • 11 · Investments: publicly traded securities

    beginning of year $5,913,530 · end of year $7,531,936

  • 14 · Intangible assets

    end of year $41,667

  • 15 · Other assets

    beginning of year $1,289 · end of year $1,289

  • 17 · Accounts payable and accrued expenses

    beginning of year $13,417 · end of year $18,694

  • 18 · Grants payable

    end of year $77,235

  • 24 · Unsecured notes and loans payable

    beginning of year $53,145 · end of year $32,028

  • 27 · Net assets without donor restrictions

    beginning of year $5,123,295 · end of year $6,016,665

  • 28 · Net assets with donor restrictions

    beginning of year $1,223,067 · end of year $1,992,914

Mission and programs · 2023

Mission

CREUTZFELDT-JAKOB DISEASE (CJD) IS A RARE, RAPIDLY PROGRESSIVE NEURODEGENERATIVE DISEASE, ONE OF SEVERAL PRION DISEASES CAUSED BY PRION PROTEINS THAT MISFOLD IN THE BRAIN. THERE IS NO TREATMENT OR CURE AND THE DISEASE IS INVARIABLY FATAL. THE MISSION OF THE CREUTZFELDT-JAKOB DISEASE FOUNDATION IS TO SUPPORT FAMILIES AFFECTED BY PRION DISEASE, RAISE AWARENESS, SUPPORT MEDICAL EDUCATION, AND FUND RESEARCH. WE CARRY OUT THIS MISSION THROUGH: -FAMILY SUPPORT INCLUDING A 7-DAY HELPLINE, REFERRALS, SUPPORT GROUPS, AND TELECONFERENCE SPEAKER SERIES -EDUCATION AND INFORMATION FOR FAMILIES, CAREGIVERS, MEDICAL PROFESSIONALS, FUNERAL PROFESSIONALS, AND INFECTION CONTROL SPECIALISTS -ADVOCACY WITH SENATORS AND PUBLIC POLICY MAKERS -ANNUAL FAMILY CONFERENCE THAT BRINGS TOGETHER AFFECTED FAMILIES AND PRION DISEASE EXPERTS -FAMILY WORKSHOPS HELD AROUND THE COUNTRY -COLLABORATION WITH SCIENTISTS, CLINICIANS, MEDICAL CENTERS, HEALTH AUTHORITIES, PROFESSIONAL ORGANIZATIONS, AND INTERNATIONAL PATIENT AS

Activities or mission (Part I)

TO SUPPORT FAMILIES AFFECTED BY PRION DISEASE, RAISE AWARENESS, AND SUPPORT MEDICAL EDUCATION AND RESEARCH.

  • THE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO ASSIST OUR NATIONWIDE CONSTITUENTS, INCLUDING: HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY WORKSHOPS, TELECONFERENCE SUPPORT GROUPS, SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, CAREGIVER SUPPORT GROUPS, AND SUPPORT AND/OR 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 2,200 CALLS AND EMAILS IN 2023, PROVIDING INFORMATION AND REFERRALS AND RESPONDING TO QUESTIONS AND CONCERNS FROM FAMILY MEMBERS, MEDICAL PROFESSIONALS, FUNERAL DIRECTORS, AND INFECTION CONTROL SPECIALISTS. WE SENT CAREGIVING BINDERS TO MORE THAN 158 FAMILIES AND HOSPICE PROVIDERS. AT OUR 2023 CJD FOUNDATION FAMILY CONFERENCE, A TOTAL OF 150 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 36 TELECONFERENCE SUPPORT GROUPS IN 2023. 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 $469,079

  • IN 2023, THE CJD FOUNDATION AWARDED 718,205 IN GRANTS TO 9 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 45 RESEARCHERS WORLDWIDE APPLIED. GRANT RECIPIENTS PRESENT THEIR RESEARCH AT THE CJD FOUNDATION'S ANNUAL FAMILY CONFERENCE. THE CJD FOUNDATION HAS AWARDED MORE THAN 86 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 $776,486 · Grants $718,205

  • THE CJD FOUNDATION HOSTS GRANT ROUND PRESENTATION, INFECTION CONTROL SEMINARS, AND FUNERAL EDUCATION AROUND THE COUNTRY, AT NO CHARGE. OUR MEDICAL EDUCATION PROGRAMS ARE INSTRUCTED BY PRION DISEASE EXPERTS. IN 2023, 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 -BAYSTATE UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL -CAPE COD FALMOUTH HOSPITAL IN FALMOUTH, MA. FUNERAL EDUCATION PRESENATIONS WERE HELD IN: -INDIANAPOLIS, INDIANA WE ALSO RESPONDED TO REQUESTS FOR INFORMATION FROM 60 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 $42,541

  • ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS.

    Expenses $45,929

As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Deborah Yobs

    PRESIDENT/EX

    Total calculated
    $111,457
    From this org
    $111,457
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

  • Brian Appleby

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Trevor Baierl

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Pamela Fear

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Lavonne Hall

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Clarence Hunter

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Amanda Baxley Kalinsky

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Janine Kock

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Jay Levy

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Mayra Lichter

    CHAIRMAN, RE

    Total calculated
    $0
    Hours/week
    2

  • Patricia McGill

    TREASURER

    Total calculated
    $0
    Hours/week
    2

  • Kristen McGinnis

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Breanda Meaney

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Dave Morris

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Frank Myers

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Molly Nocerino

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Joe Pohl

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Tim Schwister

    SECRETARY

    Total calculated
    $0
    Hours/week
    2

  • Deana Simpson

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Maria Thacker-Goethe

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Michael Vitanza

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Jeffrey Yaffa

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Stuart Yaffa

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    2

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.

Grants on this return

Provenance

Return type
form_990
Tax year
2023
Filed
1 August 2024
IRS schema version
2023v5.0
Source object
202432439349300013

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

The source document this was parsed from is served over the API, which is where bulk and document access live.