DUP 15Q ALLIANCE Charity Report

Public IRS 990 nonprofit record

DUP 15Q ALLIANCE

EIN 20-0751232 · Specifically Named Diseases (G80)

What they do

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.

Before you give

Should I give to this charity?

Easy charity check

Look at where the money went

Of every $100 spent, about $82.90 was reported for mission work. Use the spending picture below and ask what results that work produced.

Plain answer: A tax form cannot prove that a charity is doing good. It can show how the charity says it spent its money—and point out questions you should ask.

Basic facts we verified

IRS warning checkNo IRS revocation warning appears in this data.

Money report from 2024The charity has a recent tax report to read.

They explain their jobThe charity tells us what it is trying to do.

They name their leaders12 people are listed in the latest report.

You can reach themThey list contact information, so you can ask questions.

Money made simple

68.75%of revenue went to mission work82.9% of expenses · Program services

5.49%of revenue went to fundraising6.6% of expenses

$82.97spent for every $100 of revenueRevenue covered expenses this year.

8.73%of revenue went to management and office costs10.5% of expenses

$1.11in assets for every $1 spent this yearSome assets cannot be spent right away.

58.8%of its money came from giftsOther money may come from services or investments.

Ask these three easy questions

Who did you help? Ask for a recent story or report that shows real results.
What will my money do? Ask exactly what your gift will pay for.
Is this really the charity? Give only through its official website or confirmed phone number.

Pay context: The highest compensation shown in this filing is $113,440 for CARRIE HOWELL (EXECUTIVE DI). Compare pay with organizations of similar size and complexity.

Bottom line: Do not decide from a name, mission statement, or tax status alone. Look at where the money went, then ask what changed, who was helped, and what your gift will do. YouCanGiveBack does not endorse or grade organizations.

Money

Financial picture

Tax year 2024

A plain-language look at the latest Form 990 figures available. These numbers help you ask better questions; they do not, by themselves, rate whether a charity is good or bad.

$100revenue

How each $100 of revenue was used

The large number compares each expense with revenue. The smaller number shows its share of total expenses.

Total reported revenue$988,446

Mission workProgram services$679,56468.75% of revenue82.9% of expenses

ManagementOffice and general costs$86,2638.73% of revenue10.5% of expenses

FundraisingAsking for donations$54,2525.49% of revenue6.6% of expenses

Revenue left after expensesReported annual surplus$168,36717.03% of revenueShown in gray on the chart

Total expenses$820,07982.97% of revenue

Gray means reported revenue left after expenses for this filing year. It does not necessarily mean cash sitting in a bank account.

Has the pattern changed?

Colored bars = expense mix: how each year’s expenses were divided. Total expenses vs. revenue shows whether the charity spent less or more than it received. The current filing is first.

YearExpense mixDetails

2024CurrentExpense mix: 82.9% mission · 10.5% management · 6.6% fundraisingTotal expenses: 82.97% of revenue

2023Expense mix: 85.5% mission · 8.9% management · 5.6% fundraisingTotal expenses: 98.94% of revenue

2022Expense mix: 78.9% mission · 12.4% management · 8.7% fundraisingTotal expenses: 98.72% of revenue

2021Expense mix: 79.0% mission · 16.7% management · 4.3% fundraisingTotal expenses: 112.57% of revenue

2020Expense mix: 72.5% mission · 22.4% management · 5.1% fundraisingTotal expenses: 104.66% of revenue

2019Expense mix: 79.3% mission · 10.4% management · 10.3% fundraisingTotal expenses: 103.87% of revenue

2018Expense mix: 67.8% mission · 12.2% management · 20.0% fundraisingTotal expenses: 71.09% of revenue

2017Expense mix: 78.9% mission · 6.7% management · 14.4% fundraisingTotal expenses: 120.21% of revenue

Money in and money out

Revenue$988,446

Expenses$820,079

Annual surplus $168,367 Revenue was higher than expenses for this filing year.

Reported spending amounts

Mission work means the Form 990 category called program services. These are reported accounting categories—not an independent measurement of results.

Mission work (program services)$679,564 · 82.9% of expenses

Management and office costs$86,263 · 10.5% of expenses

Fundraising$54,252 · 6.6% of expenses

See all reported dollar amounts

Revenue$988,446

Expenses$820,079

Assets$909,630

Income$1,086,096

Contributions$580,723

Mission work (program services)$679,564

Fundraising$54,252

Grants given$1,286,824

Average grant$55,949

Management and general$86,263

Accounting fees$6,901

People

Leadership and board

Tax year 2024

Names, titles, time, and compensation below are reported by the organization on its Form 990.

People reported as paid

Person and titleCompensation

CARRIE HOWELLEXECUTIVE DI · 40 hrs/week $113,440

Compensation alone does not tell whether pay is reasonable. Consider the charity’s size, work, location, and results.

See everyone listed on the board or leadership roster (12)

CARRIE HOWELLEXECUTIVE DI

ANNE KARCHPRESIDENT/CO

ELINA MARCHENKOBOARD MEMBER

JACQUELINE VANDERHOOFBOARD MEMBER

JAMES FINKBOARD MEMBER

JOE IVANSECRETARY/TR

LISA FEEHERYPRESIDENT/CO

MIKE PORATHBOARD MEMBER

SAM QUIGLEYBOARD MEMBER

SARAH THACKERBOARD MEMBER

SOPHIA CACCIATOREBOARD MEMBER

TONY MARMOFORMER TREAS

About this charity

Recognized since: January 2004
Location: 250 N TRADE ST, MATTHEWS, NC 28105-9449
County: Mecklenburg
In care of: % VANESSA VOGEL-FARLEY
Primary officer: MIKE PORATH, BOARD MEMBER

How to reach them

WebsiteVisit the charity’s website Emailinfo@disabilityrightsca.orghttp Phone(855) 387-1572

Filing and classification

Latest tax year: 2024
Tax period began: January 1, 2024
Return type: 990
Tax preparer: DAVIES GOLDSTEIN & ASSOCIATES CPAS
NTEE classification: Specifically Named Diseases (G80)
IRS tax category: Specifically Named Diseases
Grant-giving organization: Yes