Public Charity

CREUTZFELDT-JAKOB DISEASE FOUNDATION INC

CREUTZFELDT-JAKOB DISEASE FOUNDATION INC is a Public Charity headquartered in AKRON, OH. Financial data from the 2024 filing: $2.9M revenue, $1.9M expenses, $9.2M total assets. 73 publicly reported grants to this organization, totaling roughly $1.7M, appear in IRS filings.

EIN: 650404623 AKRON, OH Latest filing: 2024
Total Revenue$2.9M
Total Expenses$1.9M
Total Assets$9.2M
Grant Records73
Funding Total$1.7M
Filing Years2019–2024

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)

Where $100 goes at Creutzfeldt-Jakob Disease Foundation Inc

How Creutzfeldt-Jakob Disease Foundation Inc divides every $100 it spends, from its own Form 990 filings, averaged across 7 years.

$84 Programs the work itself
$10 Management running the organization
$6 Fundraising raising the next dollar

Inside the $84 for programs

$53
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
63% of program spending · Reported in the filing: 94 grants
$26
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…
31% of program spending · Reported in the filing: 2,563 calls; 174 families; 155 members
$3
Advocacy with political representatives and public policy makers
3% of program spending

Plus 1 more program. Cost per person served and the full program breakdown are on the full profile.

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Source: Form 990 filings with the IRS, latest fiscal year 2024. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.

Officers & Directors

BOARD MEMBER Amanda Baxley Kalinsky
BOARD MEMBER Brenda Meaney
BOARD MEMBER Brian Appleby
BOARD MEMBER Clarence Hunter
BOARD MEMBER Dave Morris
PRESIDENT/EXECUTIVE DIRECTOR Deborah Yobs

Officer compensation and complete director data available with membership.

Top Grant Purposes

General Support
$1,351,748 47 grants
Research & Policy
$133,995 9 grants
Health & Medicine
$110,000 9 grants
Human & Social Services
$24,300 3 grants
Unspecified
$62,789 4 grants

Financial Trends

Year Revenue Expenses Assets
2024 $2.9M $1.9M $9.2M
2023 $2.9M $1.5M $8.1M
2022 $2.9M $1.3M $6.4M
2020 $1.8M $1.0M $3.6M
2019 $1.7M $963K $2.7M

Between 2019 and 2024, reported annual revenue grew from $1.7M to $2.9M (+72%), with total assets most recently reported at $9.2M.

Interactive year-over-year charts and full filing details available with membership.

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