Public Charity

DUP 15Q ALLIANCE

DUP 15Q ALLIANCE is a nonprofit organization categorized as Public Charity based in MATTHEWS, NC. Its most recent IRS filing (2025) reports revenue of $7.0M, expenses of $1.5M, total assets of $6.4M. Imperigo tracks 33 reported grant relationships connected to this organization totaling approximately $1.5M.

EIN: 200751232 MATTHEWS, NC Specifically Named Diseases NTEE: G80 Latest filing: 2025
Total Revenue$7.0M
Total Expenses$1.5M
Total Assets$6.4M
Grant Records33
Funding Total$1.5M
Filing Years2020–2025

Mission

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.

Where $100 goes at Dup 15Q Alliance

How Dup 15Q Alliance divides every $100 it spends, from its own Form 990 filings, averaged across 8 years.

$80 Programs the work itself
$12 Management running the organization
$8 Fundraising raising the next dollar

Inside the $80 for programs

$46
Scientific and clinical initiatives
58% of program spending · Reported in the filing: 500 members; 15 clinics
$27
Family support in 2025, dup15q alliance continued to increase programming to support individuals, their families and caregivers, as well as extended supporters
33% of program spending
$7
Education and outreach
9% of program spending
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Source: Form 990 filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.

Officers & Directors

SECRETARY Anne Karch
DIRECTOR Dylan Ritter
BOARD MEMBER Elina Marchenko
BOARD MEMBER Guy Calvert
BOARD MEMBER Jacqueline Vanderhoof
BOARD MEMBER Joe Ivan

Officer compensation and complete director data available with membership.

Top Grant Purposes

General Support
$1,302,344 26 grants
Health & Medicine
$163,100 4 grants
Unspecified
$16,552 2 grants

Financial Trends

Year Revenue Expenses Assets
2025 $7.0M $1.5M $6.4M
2024 $988K $820K $910K
2023 $923K $913K $669K
2022 $555K $548K $603K
2020 $519K $543K $678K

Between 2020 and 2025, reported annual revenue grew from $519K to $7.0M (+1255%), with total assets most recently reported at $6.4M.

Interactive year-over-year charts and full filing details available with membership.

See the full picture for DUP 15Q ALLIANCE

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