CREUTZFELDT-JAKOB DISEASE FOUNDATION INC

EIN: 650404623 501(c)(3)

AKRON, OH

Total Revenue
$2,943,480
Total Expenses
$1,541,598
Total Assets
$8,137,536
Net Assets
$8,009,579
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
1993
Legal Domicile
FL
Principal Officer
DEBORAH YOBS
Phone
8006591991
Tax Period
2023-01-01 to 2023-12-31

CREUTZFELDT-JAKOB DISEASE FOUNDATION INC, founded in 1993, is a community nonprofit that reported $2.9M in total revenue in fiscal year 2023. The organization ran a surplus of $1.4M, a strong 48% operating margin.

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

Program Service Accomplishments

Program 1
Expenses: $469,079

THE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO ASSIST OUR NATIONWIDE CONSTITUENTS, INCLUDING: HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY WORKSHOPS, TELECONFERENCE SUPPORT...

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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.

Program 2
Expenses: $776,486

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...

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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.

Program 3
Expenses: $42,541

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...

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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.

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2023)

Revenue Breakdown

Contributions & Grants $2,770,443
Program Service Revenue $41,100
Investment Income $84,302
Other Revenue $47,635
TOTAL REVENUE $2,943,480

Expense Breakdown

Grants Paid $718,205
Salaries & Benefits $396,748
Fundraising Expenses $84,293
Program Expenses $1,334,035
Other Expenses $426,645
TOTAL EXPENSES $1,541,598

Year-over-Year Comparison

2023 2022 Change
Revenue $2,943,480 $2,861,917 +0.0%
Expenses $1,541,598 $1,274,442 +0.2%
Net Income $1,401,882 $1,587,475 -0.1%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
18
Independent Members
18
Employees
6
Volunteers
350

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
5
$111,457
Total Directors
22
$0
Key Employees
0
$0
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
DEBORAH YOBS PRESIDENT/EX 40.00
Officer
$111,457 $0 $111,457
BRIAN APPLEBY BOARD MEMBER 2.00
Director
$0 $0 $0
TREVOR BAIERL BOARD MEMBER 2.00
Director
$0 $0 $0
PAMELA FEAR BOARD MEMBER 2.00
Director
$0 $0 $0
LAVONNE HALL BOARD MEMBER 2.00
Director
$0 $0 $0
CLARENCE HUNTER BOARD MEMBER 2.00
Director
$0 $0 $0
AMANDA BAXLEY KALINSKY BOARD MEMBER 2.00
Director
$0 $0 $0
JANINE KOCK BOARD MEMBER 2.00
Director
$0 $0 $0
JAY LEVY BOARD MEMBER 2.00
Director
$0 $0 $0
MAYRA LICHTER CHAIRMAN, RE 2.00
Officer Director
$0 $0 $0
PATRICIA MCGILL TREASURER 2.00
Officer Director
$0 $0 $0
KRISTEN MCGINNIS BOARD MEMBER 2.00
Director
$0 $0 $0
BREANDA MEANEY BOARD MEMBER 2.00
Director
$0 $0 $0
DAVE MORRIS BOARD MEMBER 2.00
Director
$0 $0 $0
FRANK MYERS BOARD MEMBER 2.00
Director
$0 $0 $0
MOLLY NOCERINO BOARD MEMBER 2.00
Director
$0 $0 $0
JOE POHL BOARD MEMBER 2.00
Director
$0 $0 $0
TIM SCHWISTER SECRETARY 2.00
Officer Director
$0 $0 $0
DEANA SIMPSON BOARD MEMBER 2.00
Director
$0 $0 $0
MARIA THACKER-GOETHE BOARD MEMBER 2.00
Director
$0 $0 $0
MICHAEL VITANZA BOARD MEMBER 2.00
Director
$0 $0 $0
JEFFREY YAFFA BOARD MEMBER 2.00
Director
$0 $0 $0
STUART YAFFA VICE CHAIR 2.00
Officer Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2024 No data No data No data No data
2023 $2,943,480 $1,541,598 $8,137,536 $1,401,882
2022 $2,861,917 $1,274,442 $6,412,924 $1,587,475
2021 $2,551,633 $1,152,582 $5,032,702 $1,399,051
2020 $1,767,307 $1,021,636 $3,622,436 $745,671
2019 $1,669,970 $963,069 $2,749,540 $706,901
2018 $1,598,240 $874,748 $2,020,582 $723,492
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