Skip to main content
IRS-authorized e-file provider · not the IRS

Nonprofit · EIN 65-0404623

CREUTZFELDT-JAKOB DISEASE FOUNDATION INC

Tax-exempt · FAIRLAWN, OH 44333

Financials

$2.9M$1.5M2023$2.9M$1.9M2024
Revenue Expenses · by fiscal year end
Financials of CREUTZFELDT-JAKOB DISEASE FOUNDATION INC by year, from its e-filed returns
Year endedFormRevenueExpensesNet incomeTotal assetsLiabilitiesNet assets
December 31, 2024990$2,870,657$1,865,950$1,004,707$9,188,820$47,718$9,141,102
December 31, 2023990$2,943,480$1,541,598$1,401,882$8,137,536$127,957$8,009,579
Financial details: 990 for the year ended December 31, 2024

Revenue

Contributions, gifts and grants
$2,463,713
of which government grants
$75,325
Program service revenue
$101,200
Investment income
$341,468
Net gain from sales of assets
$13,962
Net income from fundraising events
-$38,424
Other revenue
-$35,724

Expenses

Grants and similar amounts paid
$702,920
Compensation of officers, directors and key employees
$111,457
Other salaries and wages
$252,770
Salaries, compensation and benefits (total)
$397,492
Professional fundraising fees
$0
Accounting fees
$16,105
Occupancy
$25,759
Depreciation
$18,918
Program services (functional)
$1,600,123
Management and general (functional)
$176,826
Fundraising (functional)
$89,001

Balance sheet and other

Total assets, start of year
$8,137,536
Total assets, end of year
$9,188,820
Total liabilities, end of year
$47,718
Net assets, end of year
$9,141,102
Land, buildings and equipment
$32,126
Publicly traded securities
$8,352,199
Net assets without donor restrictions
$6,797,504
Net assets with donor restrictions
$2,343,598
Gross receipts
$5,676,716
Employees
6
Volunteers
350
Year formed
1993
State of legal domicile
FL

From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.

Officers, directors and key employees

As listed on the 990 for the year ended December 31, 2024, highest compensation first.

NameTitleHours / weekCompensation
DEBORAH YOBSPRESIDENT/EXECUTIVE DIRECTOR
Officer
40$111,457
BRIAN APPLEBYBOARD MEMBER
Trustee or director
2$0
TREVOR BAIERLBOARD MEMBER (THROUGH 2/28/24)
Trustee or director
2$0
MATT COLLINSBOARD MEMBER
Trustee or director
2$0
PAMELA FEARBOARD MEMBER
Trustee or director
2$0
LAVONNE HALLBOARD MEMBER (THROUGH 2/7/24)
Trustee or director
2$0
CLARENCE HUNTERBOARD MEMBER
Trustee or director
2$0
AMANDA BAXLEY KALINSKYBOARD MEMBER
Trustee or director
2$0
JANINE KOCKBOARD MEMBER
Trustee or director
2$0
PATRICIA MCGILLTREASURER
Trustee or director, Officer
2$0
KIRSTEN MCGINNISSECRETARY
Trustee or director, Officer
2$0
BRENDA MEANEYBOARD MEMBER
Trustee or director
2$0
DAVE MORRISBOARD MEMBER
Trustee or director
2$0
FRANK MYERSBOARD MEMBER
Trustee or director
2$0
MOLLY NOCERINOBOARD MEMBER (THROUGH 4/30/24)
Trustee or director
2$0
8 more people on this return
NameTitleHours / weekCompensation
JOE POHLBOARD MEMBER
Trustee or director
2$0
MARK ROBERTSBOARD MEMBER
Trustee or director
2$0
JACOB SCHWISTERBOARD MEMBER
Trustee or director
2$0
TIM SCHWISTERBOARD MEMBER
Trustee or director
2$0
NANCY SWEELYBOARD MEMBER
Trustee or director
2$0
MARIA THACKER-GOETHEBOARD MEMBER
Trustee or director
2$0
MICHAEL VITANZABOARD MEMBER (THROUGH 7/10/24)
Trustee or director
2$0
STUART YAFFACHAIR
Trustee or director, Officer
2$0
990 for the year ended December 31, 2023: 23 people
NameTitleHours / weekCompensation
DEBORAH YOBSPRESIDENT/EX
Officer
40$111,457
BRIAN APPLEBYBOARD MEMBER
Trustee or director
2$0
TREVOR BAIERLBOARD MEMBER
Trustee or director
2$0
PAMELA FEARBOARD MEMBER
Trustee or director
2$0
LAVONNE HALLBOARD MEMBER
Trustee or director
2$0
CLARENCE HUNTERBOARD MEMBER
Trustee or director
2$0
AMANDA BAXLEY KALINSKYBOARD MEMBER
Trustee or director
2$0
JANINE KOCKBOARD MEMBER
Trustee or director
2$0
JAY LEVYBOARD MEMBER
Trustee or director
2$0
MAYRA LICHTERCHAIRMAN, RE
Trustee or director, Officer
2$0
PATRICIA MCGILLTREASURER
Trustee or director, Officer
2$0
KRISTEN MCGINNISBOARD MEMBER
Trustee or director
2$0
BREANDA MEANEYBOARD MEMBER
Trustee or director
2$0
DAVE MORRISBOARD MEMBER
Trustee or director
2$0
FRANK MYERSBOARD MEMBER
Trustee or director
2$0
MOLLY NOCERINOBOARD MEMBER
Trustee or director
2$0
JOE POHLBOARD MEMBER
Trustee or director
2$0
TIM SCHWISTERSECRETARY
Trustee or director, Officer
2$0
DEANA SIMPSONBOARD MEMBER
Trustee or director
2$0
MARIA THACKER-GOETHEBOARD MEMBER
Trustee or director
2$0
MICHAEL VITANZABOARD MEMBER
Trustee or director
2$0
JEFFREY YAFFABOARD MEMBER
Trustee or director
2$0
STUART YAFFAVICE CHAIR
Trustee or director, Officer
2$0

Address and contacts

Address (IRS master file)
3634 W MARKET ST STE 110 # S, FAIRLAWN, OH 44333-4539
In care of
% DAVID H LICHTER ESQ
Principal officer (990 for 2024)
DEBORAH YOBS, 3634 WEST MARKET STREET 110, AKRON, OH 44333
Signed the 990
DEBORAH YOBS, PRESIDENT/EXECUTIVE DIRECTOR
Phone
(800) 659-1991
Return prepared by
CIUNI & PANICHI INC

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. (CONTINUED ON SCHEDULE O)

990 for the year ended December 31, 2024

Program accomplishments

  • 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

What it must file and when

IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.

Tax yearYear endedDueIRS public records
2025December 31, 2025May 15, 2026Not on file
2024December 31, 2024May 15, 2025990 on file
2023December 31, 2023May 15, 2024990 on file

IRS record

EIN
65-0404623
Tax-exempt status
501(c)(3): Charitable, religious, educational or scientific organization
Foundation status
Publicly supported organization (170(b)(1)(A)(vi))
Donations deductible (Pub 78)
Public charity, 50% deduction limit
Exempt since
1994
Accounting year ends
December
Files
Form 990 or 990-EZ
Assets (IRS master file)
$9,188,820
Income (IRS master file)
$5,676,716

Filing history

FormYear endedRevenueExpensesAssetsReturn
990December 2024$2,870,657$1,865,950$9,188,820XML
990December 2023$2,943,480$1,541,598$8,137,536XML
990December 2022$2,861,917$1,274,442$6,412,924IRS
990December 2021–––IRS
990December 2020–––IRS
990December 2018–––IRS

990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 65-0404623).

Questions about CREUTZFELDT-JAKOB DISEASE FOUNDATION INC

What is the EIN of CREUTZFELDT-JAKOB DISEASE FOUNDATION INC?
The employer identification number (EIN) of CREUTZFELDT-JAKOB DISEASE FOUNDATION INC is 65-0404623.
Is CREUTZFELDT-JAKOB DISEASE FOUNDATION INC tax-exempt?
Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1994.
Are donations to CREUTZFELDT-JAKOB DISEASE FOUNDATION INC tax-deductible?
Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
Which annual return does CREUTZFELDT-JAKOB DISEASE FOUNDATION INC file?
Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
When is the next return of CREUTZFELDT-JAKOB DISEASE FOUNDATION INC due?
The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
When did CREUTZFELDT-JAKOB DISEASE FOUNDATION INC last file with the IRS?
The latest return in the IRS public files is the 990 for the year ended December 2024.
Who is the principal officer of CREUTZFELDT-JAKOB DISEASE FOUNDATION INC?
The 990 for the year ended December 31, 2024 names DEBORAH YOBS.
Who are the officers and directors of CREUTZFELDT-JAKOB DISEASE FOUNDATION INC?
The 990 for the year ended December 31, 2024 lists 23 people; 1 received compensation from the organization, the highest $111,457 (DEBORAH YOBS, PRESIDENT/EXECUTIVE DIRECTOR).
How much revenue does CREUTZFELDT-JAKOB DISEASE FOUNDATION INC have?
On its 990 for the year ended December 31, 2024 it reported revenue of $2,870,657, expenses of $1,865,950 and total assets of $9,188,820 at year end.

Other nonprofits in FAIRLAWN

All nonprofits in FAIRLAWN · Ohio