Creutzfeldt-Jakob Disease Foundation Inc
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.
Key facts about Creutzfeldt-Jakob Disease Foundation Inc
In short: Creutzfeldt-Jakob Disease Foundation Inc gave $200K across 2 grants in 2024 (avg $100K), mostly in Ohio. Source: 2024 IRS Form 990.
- EIN
- 65-0404623
- Latest 990 filing
- Form 990, 2024
- Annual giving (2024)
- $200,000
- Grants made (2024)
- 2
- Average grant
- $100,000
- Median grant
- $100,000
- Total assets
- $9,188,820
- Primary geography
- Ohio (50% of itemized 2024 grant dollars)
Data from IRS Form 990, 2024; updated September 2026.
Financial Overview
From 2024 IRS Form 990 · View filing
Total Assets
$9.2M
+12.9% YoY
Annual Giving
$200K
-42.9% YoY
Grant Count
2
-33.3% YoY
Avg Grant Size
$100K
-14.3% YoY
How Creutzfeldt-Jakob Disease Foundation Inc gives
- Giving grew 54% from 2021 to 2024. Method
From the foundation's IRS Form 990 filings. Methodology.
About Creutzfeldt-Jakob Disease Foundation Inc
Based on IRS filings
Creutzfeldt-Jakob Disease Foundation Inc is a public charity, based in Akron, OH. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $9.2M in total assets. In 2024, it awarded 2 grants totaling $200K. Net investment income was $341K.
Open Grants
9 open opportunities from Creutzfeldt-Jakob Disease Foundation Inc
The Barbara Carl Memorial Research Grant
Creutzfeldt-Jakob Disease Foundation Inc
Amount
Varies
Deadline
Rolling / Open
The Dr. Jim Barnette Memorial Grant
Creutzfeldt-Jakob Disease Foundation Inc
Amount
Varies
Deadline
Rolling / Open
The Dr. Robert Brooks Memorial Grant
Creutzfeldt-Jakob Disease Foundation Inc
Amount
Varies
Deadline
Rolling / Open
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2024 grant dollars across all 2 itemized grants.
Cities
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2024, annual grant giving ranged from $130K (2021) to $430K (2020). In 2024 it made 2 grants totaling $200K.
Grant Insights
How this funder distributes its grants
Top Recipients
Top 2 recipients in 2024
The largest 2024 recipient was Case Western Reserve ($100K). Together the top 2 received $200K.
Grant Size Distribution
15 grants across all recorded years
The most common grant size was in the $100–250K range: 10 grants of 15 (67%).
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Case Western Reserve Cleveland, OH | Research | $100,000 |
| National Institute of Allergy and Infectious Diseases Bethesda, MD | Research | $100,000 |
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $9,188,820 | $8,137,536 | $6,412,924 |
| Revenue | $2,870,657 | $2,943,480 | $2,861,917 |
| Expenses | $1,865,950 | $1,541,598 | $1,274,442 |
| Net Investment Income | $341,468 | $84,302 | $37,113 |
Data update history
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS August 6, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS October 14, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS October 13, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS August 30, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS October 31, 2025)
- IRS filings on file for fiscal years 2020–2024
Leadership & Key People
Officers and directors from IRS filings
Creutzfeldt-Jakob Disease Foundation Inc is led by Deborah Yobs, President & Executive Director since 2024 (on filings since 2020); 1 of 23 officers listed in 2024 is compensated.
Officers on the 2024 filing
Deborah Yobs
President & Executive Director
President & Executive → President & Executive Director, 2024
On filings since 2020
40 hrs/week
$111K (2020) → $111K (2024)
Stuart Yaffa
Chair
Treasurer → Vice Chair, 2023
Vice Chair → Chair, 2024
On filings since 2020
2 hrs/week
No compensation reported
Amanda Baxley Kalinsky
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Brian Appleby
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Clarence Hunter
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Dave Morris
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Janine Kock
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Lavonne Hall
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Maria Thacker-Goethe
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Michael Vitanza
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Molly Nocerino
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Pamela Fear
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Patricia McGill
Treasurer
Secretary → Treasurer, 2023
On filings since 2020
2 hrs/week
No compensation reported
Tim Schwister
Board Member
Board Member → Secretary, 2023
Secretary → Board Member, 2024
On filings since 2020
2 hrs/week
No compensation reported
Trevor Baierl
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Joe Pohl
Board Member
On filings since 2021
2 hrs/week
No compensation reported
Brenda Meaney
Board Member
On filings since 2022
2 hrs/week
No compensation reported
Frank Myers
Board Member
On filings since 2023
2 hrs/week
No compensation reported
Jacob Schwister
Board Member
New on the 2024 filing
2 hrs/week
No compensation reported
Kirsten McGinnis
Secretary
New on the 2024 filing
2 hrs/week
No compensation reported
Mark Roberts
Board Member
New on the 2024 filing
2 hrs/week
No compensation reported
Matt Collins
Board Member
New on the 2024 filing
2 hrs/week
No compensation reported
Nancy Sweely
Board Member
New on the 2024 filing
2 hrs/week
No compensation reported
Former officers (7)
- Former: Deana Simpson (2020–2023) — Board Member
- Former: Jay Levy (2020–2023) — Board Member
- Former: Jeffrey Yaffa (2020–2023) — Board Member
- Former: Mayra Lichter (2020–2023) — Chairman
- Former: Kristen McGinnis (2023) — Board Member
- Former: Charles Cash (2020–2021) — Board Member · Filing note: Resigned
- Former: Veronica Oberdorf (2020–2021) — Board Member
Data from IRS Form 990 filings, 2020–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $111K, to Deborah Yobs (President/Executive Director).
Frequently asked questions about Creutzfeldt-Jakob Disease Foundation Inc
How much does Creutzfeldt-Jakob Disease Foundation Inc give each year?
Creutzfeldt-Jakob Disease Foundation Inc gave $200K across 2 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $350K across 3 grants.
How large is Creutzfeldt-Jakob Disease Foundation Inc?
Creutzfeldt-Jakob Disease Foundation Inc reported $9.2M in total assets on its 2024 IRS Form 990. Its revenue that year was $2.9M.
Where does Creutzfeldt-Jakob Disease Foundation Inc operate?
Creutzfeldt-Jakob Disease Foundation Inc has awarded grants in Colorado, Massachusetts, Maryland, Missouri, Montana, Nebraska, Ohio, Texas.
What is Creutzfeldt-Jakob Disease Foundation Inc's EIN?
Creutzfeldt-Jakob Disease Foundation Inc's EIN (Employer Identification Number) is 65-0404623. IRS Form 990 filing data is available on this page for 2020–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Here's the math on researching Creutzfeldt-Jakob Disease Foundation Inc by hand.
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