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.
Financial Overview
From 2024 IRS Form 990-PF
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
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PRO- Giving trend analysis — growing or declining?
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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
Giving History
Grant recipients and amounts by year
No grants recorded for .
Who else does Dup 15q Alliance fund?
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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 | — |
Geographic Focus
Where this funder has awarded grants
Grant Distribution by State
Cities
Data last updated March 2026. Sourced from IRS Form 990-PF filings.
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