← CREUTZFELDT-JAKOB DISEASE FOUNDATION INC

Form 990 for tax year 2022

Filed by CREUTZFELDT-JAKOB DISEASE FOUNDATION INC.

Totals

Total revenue: $2,861,917
Total expenses: $1,274,442
Contributions and grants received: $2,735,803
Grants paid: $651,433
Program service revenue: $0
Investment income: $37,113
Other revenue: $89,001
Total assets, end of year: $6,412,924
Total liabilities, end of year: $66,562
Net assets or fund balances, end of year: $6,346,362
Program services expenses (Part IX): $1,086,301
Management and general expenses: $127,845
Fundraising expenses: $60,296
Program service expenses (Part III): $1,086,301

Program services were 85.2% 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

$595,795
1e · Government grants (contributions)

$74,396
1f · All other contributions, gifts and grants

$2,065,612
1g · Noncash contributions included above

$5,003
3 · Investment income

total $83,547 · excluded $83,547
7a · Gross sales of assets other than inventory

securities $1,571,596
7b · Less cost or other basis and sales expenses

securities $1,618,030
7c · Gain or loss

securities -$46,434
7d · Net gain or loss

total -$46,434 · excluded -$46,434
8a · Fundraising events: gross income

$132,404
8a · Fundraising events: contributions included on line 1c

$595,795
8b · Fundraising events: direct expenses

$61,575
8c · Net income from fundraising events

total $70,829 · excluded $70,829
9a · Gaming: gross income

$10,690
9c · Net income from gaming

total $10,690 · excluded $10,690
11a · Other revenue: MISCELLANEOUS

total $7,482 · excluded $7,482
11e · Other revenue, total

$7,482

Functional expenses

Part IX, the statement of functional expenses.

1 · Grants to domestic organizations and governments

total $247,115 · program services $247,115
3 · Grants to foreign organizations and individuals

total $404,318 · program services $404,318
5 · Compensation of officers, directors and key employees

total $111,457 · program services $84,875 · management and general $16,785 · fundraising $9,797
7 · Other salaries and wages

total $231,744 · program services $181,225 · management and general $29,612 · fundraising $20,907
10 · Payroll taxes

total $27,694 · program services $21,601 · management and general $3,600 · fundraising $2,493
11c · Fees: accounting

total $12,508 · management and general $12,508
11g · Fees: other

total $55,657 · program services $43,413 · management and general $7,236 · fundraising $5,008
13 · Office expenses

total $21,852 · program services $6,596 · management and general $14,909 · fundraising $347
16 · Occupancy

total $23,415 · program services $18,264 · management and general $3,044 · fundraising $2,107
17 · Travel

total $712 · management and general $712
20 · Interest

total $121 · management and general $121
22 · Depreciation, depletion and amortization

total $1,575 · management and general $1,575
23 · Insurance

total $6,903 · management and general $6,903
24a · Other expenses: FAMILY CONFERENCE

total $35,000 · program services $35,000
24b · Other expenses: PROGRAM EXPENSE

total $25,926 · program services $25,926
24c · Other expenses: BANK SERVICE CHARGES

total $11,926 · management and general $11,926
24d · Other expenses: DONATION COLLECTION FEES

total $10,499 · program services $10,499
24e · All other expenses

total $46,020 · program services $7,469 · management and general $18,914 · fundraising $19,637

Balance sheet

Part X, book values.

1 · Cash, non-interest-bearing

beginning of year $268 · end of year $439
2 · Savings and temporary cash investments

beginning of year $611,779 · end of year $323,687
3 · Pledges and grants receivable

beginning of year $31,692 · end of year $62,062
4 · Accounts receivable

beginning of year $2,196 · end of year $14,888
8 · Inventories for sale or use

beginning of year $7,184 · end of year $7,967
9 · Prepaid expenses and deferred charges

beginning of year $2,864 · end of year $29,591
10a · Land, buildings and equipment: cost or other basis

$96,364
10b · Land, buildings and equipment: accumulated depreciation

$36,893
10c · Land, buildings and equipment, net

beginning of year $4,445 · end of year $59,471
11 · Investments: publicly traded securities

beginning of year $4,370,985 · end of year $5,913,530
15 · Other assets

beginning of year $1,289 · end of year $1,289
17 · Accounts payable and accrued expenses

beginning of year $20,525 · end of year $13,417
18 · Grants payable

beginning of year $60,200
24 · Unsecured notes and loans payable

end of year $53,145
27 · Net assets without donor restrictions

beginning of year $4,531,977 · end of year $5,123,295
28 · Net assets with donor restrictions

beginning of year $420,000 · end of year $1,223,067

Mission and programs · 2022

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 ALMOST 2,000 CALLS AND EMAILS IN 2022, 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 68 FAMILIES AND HOSPICE PROVIDERS. THE CJD FOUNDATION PROVIDES FUNDING AND REFERRALS FOR THE TAPCJD PROGRAM. VIRTUAL FAMILY CONFERENCE: DURING THE VIRTUAL CONFERENCEMORE MORE THAN 707 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS PARTICIPATIED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2022 BY VIEWING THE LIVE SESSIONS. CLOSE TO 11,000 VIEWED THE SESSIONS ONLINE DURING THE YEAR. 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. QUESTIONAIRE: THE CJD FOUNDATION IN COLLABORATION WITH THE NATIONAL PRION DISEASE PATHOLOGY SUREILLANCE CENTER CREATED A PATIENT QUESTIONNAIRE IN 2004. TO DATE MORE THAN 1,416 FAMILIES HAVE COMPLETED QUESTIONNAIRES. THIS ENABLES FAMILIES TO DOCUMENT THEIR LOVED ONE'S CASE AND PROVIDES ANNOYMOUS DATA FOR DOCTORS AND SCIENTISTS ON PATTERNS OF SYMPTOMS, DISEASE ONSEST AND DURATION, AND MORE RESULTS ARE COMPLIED THORUGHOUT THE YEAR AND SHARED ANNUALLY AT THE CJD FOUNDATION FAMILY CONFERENCE. SUPPORT GROUPS, WEBINARS AND SPEAKER SERIES: WE HOSTED 30 TELECONFERENCE SUPPORT GROUPS IN 2022. 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 $324,143
IN 2022, THE CJD FOUNDATION AWARDED 651,433 IN GRANTS TO 10 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 36 RESEARCHERS WORLDWIDE APPLIED. GRANT RECIPIENTS PRESENT THEIR RESEARCH AT THE CJD FOUNDATION'S ANNUAL FAMILY CONFERENCE. THE CJD FOUNDATION HAS AWARDED MORE THAN 77 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 $692,093 · Grants $651,433
THE CJD FOUNDATION HOSTS GRAND ROUNDS PRESENTATION, INFECTION CONTROL SEMINARS, AND FUNERAL EDUCATION AROUND THE COUNTRY, AT NO CHARGE. OUR MEDICAL EDUCATION PROGRAMS ARE INSTRUCTED BY PRION DISEASE EXPERTS. IN 2022, WE PROVIDED MEDICAL EDUCATION, FUNERAL PROGRAM AT THE VIRIGINA FUNERAL DIRECTOR'S ASSOCIATION. WE ALSO RESPONDED TO REQUESTS FOR INFORMATION FROM 80 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 $33,448
ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS.

Expenses $36,617

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

Deborah YobsDEBORAH YOBS

PRESIDENT/EX

Total calculated

$111,457

From this org

$111,457

From related orgs

$0

Other

$0

Hours/week

40
Brian ApplebyBRIAN APPLEBY

BOARD MEMBER

Total calculated

$0

Hours/week

2
Trevor BaierlTREVOR BAIERL

BOARD MEMBER

Total calculated

$0

Hours/week

2
Pamela FearPAMELA FEAR

BOARD MEMBER

Total calculated

$0

Hours/week

2
Lavonne HallLAVONNE HALL

BOARD MEMBER

Total calculated

$0

Hours/week

2
Clarence HunterCLARENCE HUNTER

BOARD MEMBER

Total calculated

$0

Hours/week

2
Amanda Baxley KalinskyAMANDA BAXLEY KALINSKY

BOARD MEMBER

Total calculated

$0

Hours/week

2
Janine KockJANINE KOCK

BOARD MEMBER

Total calculated

$0

Hours/week

2
Jay LevyJAY LEVY

BOARD MEMBER

Total calculated

$0

Hours/week

2
Mayra LichterMAYRA LICHTER

CHAIRMAN

Total calculated

$0

Hours/week

2
Patricia McGillPATRICIA MCGILL

SECRETARY

Total calculated

$0

Hours/week

2
Breanda MeaneyBREANDA MEANEY

BOARD MEMBER

Total calculated

$0

Hours/week

2
Dave MorrisDAVE MORRIS

BOARD MEMBER

Total calculated

$0

Hours/week

2
Molly NocerinoMOLLY NOCERINO

BOARD MEMBER

Total calculated

$0

Hours/week

2
Joe PohlJOE POHL

BOARD MEMBER

Total calculated

$0

Hours/week

2
Tim SchwisterTIM SCHWISTER

BOARD MEMBER

Total calculated

$0

Hours/week

2
Deana SimpsonDEANA SIMPSON

BOARD MEMBER

Total calculated

$0

Hours/week

2
Maria Thacker-GoetheMARIA THACKER-GOETHE

BOARD MEMBER

Total calculated

$0

Hours/week

2
Michael VitanzaMICHAEL VITANZA

BOARD MEMBER

Total calculated

$0

Hours/week

2
Jeffrey YaffaJEFFREY YAFFA

BOARD MEMBER

Total calculated

$0

Hours/week

2
Stuart YaffaSTUART YAFFA

TREASURER

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

CASE WESTERN RESERVE

$100,000

RESEARCH
UNIVERSITY OF TEXAS

$100,000

RESEARCH
NATIONAL INSTITUTES OF HEALTH

$47,115

RESEARCH

Provenance

Return type: form_990
Tax year: 2022
Filed: 15 September 2023
IRS schema version: 2022v5.0
Source object: 202322869349300627

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