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.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$910K
+36.1% YoY
Annual Giving
$371K
+50.3% YoY
Grant Count
4
+33.3% YoY
Avg Grant Size
$93K
+12.7% YoY
About Dup 15q Alliance
Based on IRS filings
Dup 15q Alliance is a nonprofit organization 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
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $909,630 | $668,536 | $603,477 |
| Revenue | $988,446 | $922,627 | $555,149 |
| Expenses | $820,079 | $912,811 | $548,054 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $10,162 | $8,695 | $9,253 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 4 recipients in 2024
Grant Size Distribution
15 grants across all recorded years
Open Grants
1 open opportunity from Dup 15q Alliance
Giving History
Grant recipients and amounts by year
Among its reported 2024 grants, the largest include Various ($246,359), Unc Chapel Hill ($50,000), Children's Hospital Los Angeles ($50,000).
| Recipient | Purpose | Amount |
|---|---|---|
| WEILL MEDICAL COLLEGE OF CORNELL NEW YORK, NY | DREAM FUND GRANT | $25,000 |
| UNC CHAPEL HILL CHAPEL HILL, NC | DREAM FUND GRANT | $50,000 |
| CHILDREN'S HOSPITAL LOS ANGELES LOS ANGELES, CA | NYS NDD PROGRAM | $50,000 |
| VARIOUS | RESEARCH | $246,359 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| CARRIE HOWELL | EXECUTIVE DI | 40 | $113,440 |
| SOPHIA CACCIATORE | BOARD MEMBER | 5 | — |
| LISA FEEHERY | PRESIDENT/CO | 10 | — |
| JAMES FINK | BOARD MEMBER | 5 | — |
| JOE IVAN | SECRETARY/TR | 5 | — |
| ANNE KARCH | PRESIDENT/CO | 10 | — |
| ELINA MARCHENKO | BOARD MEMBER | 5 | — |
| TONY MARMO | FORMER TREAS | 5 | — |
| MIKE PORATH | BOARD MEMBER | 5 | — |
| SAM QUIGLEY | BOARD MEMBER | 5 | — |
| SARAH THACKER | BOARD MEMBER | 5 | — |
| JACQUELINE VANDERHOOF | BOARD MEMBER | 5 | — |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is Dup 15q Alliance?
Dup 15q Alliance is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in MATTHEWS, NC. It holds $910K in total assets as of 2024.
How large is Dup 15q Alliance?
As of 2024, Dup 15q Alliance holds $910K in total assets with $988K in annual revenue. It awarded 4 grants totaling $371K in 2024.
Where does Dup 15q Alliance operate?
Dup 15q Alliance has awarded grants in California, Georgia, Illinois, North Carolina, New York.
What size grants does Dup 15q Alliance award?
In 2024, Dup 15q Alliance awarded 4 grants totaling $371K — an average of about $93K per grant, based on its IRS Form 990 filings.
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.
Explore Open Grants
Browse active grant opportunities in Dup 15q Alliance's focus areas in our free grants database
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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