American Syringomyelia Alliance Project Inc
To provide support for persons affected by Syringomyelia and Chiari Malformation through support groups, information dissemination, conducting an annual medical conference, and distributing educational materials. Also to raise funds to provide grants for medical research.
American Syringomyelia Alliance Project Inc at a glance
In short: American Syringomyelia Alliance Project Inc gave $24K across 2 grants in 2024 (avg $12K), mostly in Utah. Source: 2024 IRS Form 990.
- Annual giving (2024)
- $24,413
- -26.8% vs 2023
- Grants made (2024)
- 2
- +100.0% vs 2023
- Average grant
- $12,207
- -63.4% vs 2023
- Median grant
- $12,207
- Total assets
- $4,423,982
- +14.0% vs 2023
- Primary geography
- Utah (54% of itemized 2024 grant dollars)
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026.
How to apply to American Syringomyelia Alliance Project Inc
Open Grants
5 open opportunities from American Syringomyelia Alliance Project Inc
ASAP BJO Equipment Grant (Bobby Jones Open Grant)
American Syringomyelia Alliance Project Inc
Amount
Up to $1,000
Deadline
Rolling
ASAP Research Grant Program
American Syringomyelia Alliance Project Inc
Amount
Up to $50,000 / year
Deadline
Rolling
Bobby Jones Open (BJO) Equipment Grant
American Syringomyelia Alliance Project Inc
Amount
Up to $1,000
Deadline
Deadline not published
Who American Syringomyelia Alliance Project Inc funds
How this funder distributes its grants
Top Recipients
Top 2 recipients in 2024
The largest 2024 recipient was University of Utah ($13K). Together the top 2 received $24K.
Grant Size Distribution
12 grants across all recorded years
The most common grant size was under $50K: 10 grants of 12 (83%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2024 grant dollars across all 2 itemized grants.
Cities
How American Syringomyelia Alliance Project Inc gives
- Giving fell 86% from 2021 to 2024. 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 2024, annual grant giving ranged from $24K (2024) to $172K (2021). In 2024 it made 2 grants totaling $24K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Utah Salt Lake City, UT | Medical Research | $13,246 |
| University of Akron Akron, OH | Medical Research | $11,167 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $4,423,982 | $969,539 | $417,316 | $24,413 | 2 | $275,335 |
| 2023 | $3,880,209 | $887,640 | $401,029 | $33,333 | 1 | $28,638 |
| 2022 | $3,398,622 | $1,211,738 | $346,847 | $80,123 | 3 | $-17,894 |
| 2021 | $2,630,578 | $676,827 | $445,268 | $172,184 | 5 | $36,594 |
| 2020 | $2,306,247 | $847,991 | $369,114 | $64,433 | 1 | $22,170 |
About American Syringomyelia Alliance Project Inc
Based on IRS filings
American Syringomyelia Alliance Project Inc is a public charity focused on Adults, based in Longview, TX. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $4.4M in total assets. In 2024, it awarded 2 grants totaling $24K. Net investment income was $275K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
American Syringomyelia Alliance Project Inc is led by Patrice Schaublin, Executive Director on every filing since 2020; 1 of 14 officers listed in 2024 is compensated.
Officers on the 2024 filing
Patrice Schaublin
Executive Director
On filings since 2020
35 hrs/week
$36K (2020) → $66K (2024)
Eric Berning
President
On filings since 2020
1 hr/week
No compensation reported
Gerald Grant MD
Research Chair
On filings since 2020
1 hr/week
No compensation reported
Robert Keating MD
Medical Advisory Chair
On filings since 2020
1 hr/week
No compensation reported
Molly Lichtenstein
Director
On filings since 2020
5 hrs/week
No compensation reported
Paolo Bolognese MD
Director
On filings since 2020
1 hr/week
No compensation reported
Richard Simon
Director
Secretary → Director, 2021
On filings since 2020
1 hr/week
No compensation reported
Brian Dlouhy MD
Director
On filings since 2021
1 hr/week
No compensation reported
Ilene Ruhoy MD PhD
Director
On filings since 2022
1 hr/week
No compensation reported
Jeni Adair
Director
On filings since 2022
1 hr/week
No compensation reported
Carina Yang MD
Director
On filings since 2023
1 hr/week
No compensation reported
Annie Chapman
Treasurer
On filings since 2020
2 hrs/week
No compensation reported
John Caemmerer
Vice President
Director → Vice President, 2021
On filings since 2020
1 hr/week
No compensation reported
Michele Raye
Secretary
On filings since 2021
2 hrs/week
No compensation reported
Former officers (4)
- Former: Canna Vang MD (2022) — Director
- Former: Bridget Borys Maher (2020) — Director
- Former: Cathy Tufts (2020) — Vice President
- Former: Ian Heger MD (2020) — Director
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 $66K, to Patrice Schaublin (Executive Director).
Frequently asked questions about American Syringomyelia Alliance Project Inc
How much does American Syringomyelia Alliance Project Inc give each year?
American Syringomyelia Alliance Project Inc gave $24K across 2 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $33K across 1 grant.
How large is American Syringomyelia Alliance Project Inc?
American Syringomyelia Alliance Project Inc reported $4.4M in total assets on its 2024 IRS Form 990. Its revenue that year was $970K.
What is American Syringomyelia Alliance Project Inc?
American Syringomyelia Alliance Project Inc is a public charity focused on Adults, based in Longview, TX. It holds $4.4M in total assets as of 2024.
Where does American Syringomyelia Alliance Project Inc operate?
American Syringomyelia Alliance Project Inc has awarded grants in California, Idaho, New Jersey, Ohio, Utah, Wisconsin.
What is American Syringomyelia Alliance Project Inc's EIN?
American Syringomyelia Alliance Project Inc's EIN (Employer Identification Number) is 75-2245195. IRS Form 990 filing data is available on this page for 2020–2024.
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 2020 (received by the IRS March 15, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS March 29, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS March 18, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS March 28, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS March 31, 2025)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work American Syringomyelia Alliance Project Inc funds
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