Don't Forget ME
The mission of the organization is to raise money to fund research to find a cure and a therapy for children with BPAN. Beta-propeller protein- associated neurodegeneration (BPAN) is a genetic disorder that damages the nervous system. It is a progressive disease found in children. There are only 500 known cases in the entire world, and there is very little research being done.
Don't Forget ME at a glance
In short: Don't Forget ME gave $466K across 3 grants in 2025 (avg $155K), mostly in South Dakota. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $466,343
- +59.6% vs 2024
- Grants made (2025)
- 3
- +0.0% vs 2024
- Average grant
- $155,448
- +59.6% vs 2024
- Median grant
- $80,000
- Total assets
- $437,442
- +61.7% vs 2024
- Primary geography
- South Dakota (68% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who Don't Forget ME funds
How this funder distributes its grants
Top Recipients
Top 3 recipients in 2025
The largest 2025 recipient was Sanford Research ($316K). Together the top 3 received $466K.
Grant Size Distribution
19 grants across all recorded years
The most common grant size was in the $50–100K range: 8 grants of 19 (42%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 3 itemized grants.
Cities
How Don't Forget ME gives
- Giving held roughly steady from 2022 to 2025 (+8%). Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $85K (2020) to $466K (2025). In 2025 it made 3 grants totaling $466K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Sanford Research Sioux Falls, SD | Bpan Research | $316,343 |
| Johns Hopkins University & Medicine Baltimore, MD | Bpan Research | $80,000 |
| Children's Hospital of Philadelphia Research Institute Philadelphia, PA | Bpan Researech | $70,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants |
|---|---|---|---|---|---|
| 2025 | $437,442 | $473,163 | $472,595 | $466,343 | 3 |
| 2024 | $270,531 | $165,850 | $316,304 | $292,235 | 3 |
| 2023 | $420,985 | $372,294 | $210,325 | $207,697 | 3 |
| 2022 | $259,016 | $276,089 | $435,046 | $432,051 | 7 |
| 2021 | $417,973 | $504,964 | $241,225 | $214,353 | 3 |
| 2020 | $154,234 | $240,757 | $86,523 | $85,000 | 2 |
About Don't Forget ME
Based on IRS filings
Don't Forget ME is a public charity focused on Diseases, Disorders & Medical Disciplines, based in West Bloomfield, MI. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $437K in total assets. In 2025, it awarded 3 grants totaling $466K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Don't Forget ME is led by Kelly Kozole, President on every filing since 2020; none of the 4 officers listed in 2025 report compensation.
Officers on the 2025 filing
Kelly Kozole
President
On filings since 2020
10 hrs/week
No compensation reported
Christina Ftikas
Director
On filings since 2020
10 hrs/week
No compensation reported
Jay Colvin
Treasurer
On filings since 2020
2 hrs/week
No compensation reported
Kevin Kozole
Secretary
Secretary → Secreary, 2022
Secreary → Secretary, 2024
On filings since 2020
2 hrs/week
No compensation reported
Former officers (1)
- Former: Rod Wood (2020–2021) — Director
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Frequently asked questions about Don't Forget ME
How much does Don't Forget ME give each year?
Don't Forget ME gave $466K across 3 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $292K across 3 grants.
What is Don't Forget ME's typical grant size?
Don't Forget ME's median grant in 2025 was $80,000, and its average grant was $155,448, across 3 grants on its 2025 IRS Form 990.
Where does Don't Forget ME give grants?
Don't Forget ME gives mostly in South Dakota: 68% of the grant dollars itemized on its 2025 IRS Form 990 went to recipients there. The next largest states were Maryland (17%) and Pennsylvania (15%).
Does Don't Forget ME give general operating support?
Not in 2025: none of the 3 grants with a stated purpose on Don't Forget ME's 2025 IRS Form 990 were described as general or operating support.
How large is Don't Forget ME?
Don't Forget ME reported $437K in total assets on its 2025 IRS Form 990. Its revenue that year was $473K.
What is Don't Forget ME?
Don't Forget ME is a public charity focused on Diseases, Disorders & Medical Disciplines, based in West Bloomfield, MI. It holds $437K in total assets as of 2025.
What is Don't Forget ME's EIN?
Don't Forget ME's EIN (Employer Identification Number) is 84-3358278. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(6)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2022 (received by the IRS June 29, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS June 10, 2024)
- Added Form 990 for fiscal year 2025 (received by the IRS August 14, 2026)
- Updated Form 990 for fiscal year 2020 (received by the IRS June 7, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS May 31, 2022)
- Updated Form 990 for fiscal year 2024 (received by the IRS May 13, 2025)
Live grants for the work Don't Forget ME funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Don't Forget ME's focus areas in our free grants database
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Don't Forget ME down — hundreds of funders to go?