Dup 15Q Alliance
Dup15q alliance empowers individuals living with dup15q syndrome and other related rare diseases to reach their full potential by advancing breakthrough research and life-changing therapeutic treatments, supporting families affected by dup15q, and promoting advocacy. As the only patient advocacy grup focused on duplication 15q syndrome, our organization is devoted to advancing research into the syndrome, supporting and promoting the work of scientists, clinicians, and drug development companies in the search for treatments that will alleviate the serious and multiple symptoms of the disorder. We also work to educate families about the syndrome, supporting them with information, and connecting families together from the day they first register with us, so that they can share information and support each other. We offer families opportunities to educate their own friends and families and their communities about duplication 15q syndrome, raising awareness about this rare condition.
Dup 15Q Alliance at a glance
In short: Dup 15Q Alliance gave $371K across 4 grants in 2024 (avg $93K), top state North Carolina. Source: 2024 IRS Form 990.
- Annual giving (2024)
- $371,359
- +50.3% vs 2023
- Grants made (2024)
- 4
- +33.3% vs 2023
- Average grant
- $92,840
- +12.7% vs 2023
- Median grant
- $50,000
- Total assets
- $909,630
- +36.1% vs 2023
- Primary geography
- North Carolina (13% 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 Dup 15Q Alliance
Open Grants
1 open opportunity from Dup 15Q Alliance
Who Dup 15Q Alliance funds
How this funder distributes its grants
Top Recipients
Top 3 recipients in 2024
The largest 2024 recipient was UNC Chapel Hill ($50K). Together the top 3 received $125K.
Grant Size Distribution
15 grants across all recorded years
The most common grant size was under $50K: 7 grants of 15 (47%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2024 grant dollars across all 4 itemized grants.
Cities
How Dup 15Q Alliance gives
- Giving grew 38% 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 $75K (2020) to $371K (2024). In 2024 it made 4 grants totaling $371K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Various | Research | $246,359 |
| UNC Chapel Hill Chapel Hill, NC | Dream Fund Grant | $50,000 |
| Children's Hospital Los Angeles Los Angeles, CA | NYS NDD Program | $50,000 |
| Weill Medical College of Cornell University New York, NY | Dream Fund Grant | $25,000 |
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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 | $909,630 | $988,446 | $820,079 | $371,359 | 4 | $10,162 |
| 2023 | $668,536 | $922,627 | $912,811 | $247,151 | 3 | $8,695 |
| 2022 | $603,477 | $555,149 | $548,054 | $134,301 | 3 | $9,253 |
| 2021 | $595,041 | $739,794 | $832,762 | $268,883 | 3 | $12,714 |
| 2020 | $678,108 | $519,113 | $543,317 | $75,000 | 2 | $11,665 |
About Dup 15Q Alliance
Based on IRS filings
Dup 15Q Alliance is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Matthews, NC. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $910K in total assets. In 2024, it awarded 4 grants totaling $371K. Net investment income was $10K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Dup 15Q Alliance is led by Anne Karch, President since 2024 (on filings since 2020); 1 of 12 officers listed in 2024 is compensated.
Officers on the 2024 filing
Anne Karch
President
Secretary → Co-Chair, 2023
Co-Chair → President, 2024
On filings since 2020
10 hrs/week
No compensation reported
Lisa Feehery
President
Vice Chair → Co-Chair, 2023
Co-Chair → President, 2024
On filings since 2021
10 hrs/week
No compensation reported
Carrie Howell
Executive Di
On filings since 2021
40 hrs/week
$35K (2021) → $113K (2024)
Mike Porath
Board Member
On filings since 2020
5 hrs/week
No compensation reported
Tony Marmo
Former Treasurer
Board Member → Treasurer, 2021
Treasurer → Former Treasurer, 2024
On filings since 2020
5 hrs/week
No compensation reported
Elina Marchenko
Board Member
On filings since 2021
5 hrs/week
No compensation reported
Jacqueline Vanderhoof
Board Member
On filings since 2021
5 hrs/week
No compensation reported
Sam Quigley
Board Member
On filings since 2021
5 hrs/week
No compensation reported
Joe Ivan
Secretary
Board Member → Secretary, 2023
On filings since 2022
5 hrs/week
No compensation reported
Sarah Thacker
Board Member
On filings since 2023
5 hrs/week
No compensation reported
Sophia Cacciatore
Board Member
On filings since 2023
5 hrs/week
No compensation reported
James Fink
Board Member
New on the 2024 filing
5 hrs/week
No compensation reported
Former officers (11)
- Former: David Gifford (2020–2022) — Chair
- Former: Steven Kadner (2020–2022) — Board Member
- Former: Vanessa Vogel-Farley (2020–2022) — Board Member
- Former: Carlos Romero (2020–2021) — Board Member
- Former: Donna Bennett (2020–2021) — Board Member
- Former: Guy Calvert (2020) — Board Member
- Former: Joe Elassal (2020) — Board Member
- Former: Julia Jordanich (2020) — Board Member
- Former: Lauren Weissberg (2020) — Board Member
- Former: Lisa Feehrey (2020) — Board Member
- Former: Tessa Quinlan (2020) — 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 $113K, to Carrie Howell (Executive Di).
Frequently asked questions about Dup 15Q Alliance
How much does Dup 15Q Alliance give each year?
Dup 15Q Alliance gave $371K across 4 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $247K across 3 grants.
What is Dup 15Q Alliance's typical grant size?
Dup 15Q Alliance's median grant in 2024 was $50,000, and its average grant was $92,840, across 4 grants on its 2024 IRS Form 990.
Where does Dup 15Q Alliance give grants?
Dup 15Q Alliance's top state is North Carolina, with 13% of the grant dollars itemized on its 2024 IRS Form 990. The next largest states were California (13%) and New York (7%).
Does Dup 15Q Alliance give general operating support?
Not in 2024: none of the 4 grants with a stated purpose on Dup 15Q Alliance's 2024 IRS Form 990 were described as general or operating support.
How large is Dup 15Q Alliance?
Dup 15Q Alliance reported $910K in total assets on its 2024 IRS Form 990. Its revenue that year was $988K.
What is Dup 15Q Alliance?
Dup 15Q Alliance is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Matthews, NC. It holds $910K in total assets as of 2024.
What is Dup 15Q Alliance's EIN?
Dup 15Q Alliance's EIN (Employer Identification Number) is 20-0751232. 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 November 10, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS November 14, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 13, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 12, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS November 17, 2025)
- IRS filings on file for fiscal years 2020–2024
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Dup 15Q Alliance down — hundreds of funders to go?