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Dup 15q Alliance

MATTHEWS, NC EIN: 20-0751232 Website

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.

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Geographic Focus

Where this funder awards grants

Grant Distribution by State

5states

Cities

AtlantaAuroraChapel HillChicagoLos AngelesNew York

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Qualifying Distributions
Net Investment Income
$0$272K$544K$815K$1M20202021202220232024
Metric202420232022
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

$0$93K$186K$279K$371K2 grants20203 grants20213 grants20223 grants20234 grants2024

Grant Insights

How this funder distributes its grants

Top Recipients

Top 4 recipients in 2024

VARIOUS$246KUNC CHAPEL HILL$50KCHILDREN'S HOSPITAL LOS …$50KWEILL MEDICAL COLLEGE OF…$25K

Grant Size Distribution

15 grants across all recorded years

7<$50K5$50–100K3$100–250K$250–500K$500K–1M$1–5M$5M+

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).

No grants recorded for .

Leadership & Key People

Officers and directors from IRS filings

Compensation Overview

From 2024 IRS filing

CARRIE HOWELLEXECUTIVE DI$113K

From 2024 filing

NameTitleHoursCompensation
CARRIE HOWELLEXECUTIVE DI40$113,440
SOPHIA CACCIATOREBOARD MEMBER5
LISA FEEHERYPRESIDENT/CO10
JAMES FINKBOARD MEMBER5
JOE IVANSECRETARY/TR5
ANNE KARCHPRESIDENT/CO10
ELINA MARCHENKOBOARD MEMBER5
TONY MARMOFORMER TREAS5
MIKE PORATHBOARD MEMBER5
SAM QUIGLEYBOARD MEMBER5
SARAH THACKERBOARD MEMBER5
JACQUELINE VANDERHOOFBOARD MEMBER5

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

Related Funders

Similar funders by location and focus area

Data last updated April 2026. Sourced from IRS Form 990-PF filings.

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