DUP 15Q ALLIANCE

Financials

From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.

Officers, directors and key employees

As listed on the 990 for the year ended December 31, 2025, highest compensation first.

Address and contacts

Address (IRS master file)

250 N TRADE ST STE 205 PMB 155, MATTHEWS, NC 28105-9433

In care of

% VANESSA VOGEL-FARLEY

Principal officer (990 for 2025)

SARAH THACKER

Signed the 990

MIKE PORATH, EXECUTIVE DIRECTOR

Phone

(855) 387-1572

Website

WWW.DUP15Q.ORG

Return prepared by

DAVIES GOLDSTEIN & ASSOCIATES CPA'S

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.

Program accomplishments

• SCIENTIFIC AND CLINICAL INITIATIVES: THE DUP15Q ALLIANCE STANDS AT THE FOREFRONT OF COLLABORATIVE EFFORTS WITH STAKEHOLDERS IN ACADEMIC, CLINICAL, AND PHARMACEUTICAL SPACES TO ADVANCE RESEARCH INTO DUP15Q SYNDROME. IN 2025, WE FINANCIALLY SUPPORTED PARTNERSHIPS WITH TWO DIFFERENT DRUG DEVELOPMENT COMPANIES WORKING SPECIFICALLY ON TARGETED GENETIC TREATMENTS FOR DUP15Q SYNDROME. ADDITIONALLY, WE ALSO FUNDED AND AWARDED A RESEARCH GRANT TO AN ACADEMIC LAB STUDYING ONE OF THE COMPANIES' THERAPEUTIC CANDIDATES. WE DIRECTED DONATIONS TO CONTINUE A SINGLE-SITE NATURAL HISTORY STUDY INITIATED IN 2024, RECRUITING FAMILIES TO PROVIDE DATA AND BIOLOGICAL SAMPLES IN AN ONGOING STUDY OF DUP15Q AND HOW SYMPTOMS CHANGE OVER TIME. FURTHERMORE, WE WORKED TO EXPAND THE NATURAL HISTORY STUDY TO ENCOMPASS INDIVIDUALS AT OUR FAMILY CONFERENCE, AN UNDERTAKING THAT WIDENED THE ABILITY FOR OUR COMMUNITY TO PARTICIPATE IN THIS PIVOTAL STUDY. OUR BIENNIAL FAMILY CONFERENCE SAW OVER 500 MEMBERS OF THE DUP15Q SYNDROME COMMUNITY CONVENE IN INDIANAPOLIS TO CONNECT AND LEARN ABOUT WAYS THE ALLIANCE CAN SUPPORT THEM. SOME OF THE MAIN FOCUSES WERE RESEARCH, NATURAL HISTORY STUDIES, AND CLINICAL TRIALS ON THE HORIZON. WE SUPPORTED A TEAM OF COMBINEDBRAIN RESEARCHERS AT OUR CONFERENCE WHO COLLECTED BLOOD SAMPLES FROM AFFECTED INDIVIDUALS AND THEIR FAMILY MEMBERS TO SUPPORT ONGOING AND FUTURE DUP15Q RESEARCH PROJECTS. CLINICS - WE PROVIDED SUPPORT TO OUR NETWORK OF 15 CLINICS THROUGH PER- PATIENT PAYMENTS TO OFFSET COSTS OF CARE. WE ALSO SUPPORTED OUR FAMILIES THROUGH TRAVEL GRANTS AND SPECIALIZED EMERGENCY CONSULTATIONS FOR FAMILIES IN CRISIS. DUP15Q CLINICS CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS IN A VARIETY OF FIELDS WHO HAVE EXTENSIVE EXPERIENCE TREATING DUP15Q SYNDROME. OUR CLINICAL COLLABORATION WITH THE ANGELMAN SYNDROME FOUNDATION ALLOWS US TO EXPAND OUR CLINICAL FOOTPRINT, IMPROVE ACCESS TO CARE, AND BRING TOGETHER A LARGER GROUP OF MEDICAL AND RESEARCH PROFESSIONALS AROUND THE WORLD.
  Expenses $708,642 · grants $600,000 · revenue $143,668
• EDUCATION AND OUTREACH: SCIENCE SYMPOSIUM THIS YEAR WE CO-HOSTED 275 RESEARCHERS, CLINICIANS, AND INDUSTRY MEMBERS FROM AROUND THE WORLD AT THE DUP15Q ALLIANCE/ANGELMAN SYNDROME FOUNDATION SCIENCE SYMPOSIUM IN JULY. THE EVENT INCLUDED 33 PRESENTERS AND 11 POSTERS, FOSTERING COLLABORATION, SHARING INSIGHTS, AND DRIVING FORWARD NEW APPROACHES TO IMPROVING CARE AND ADVANCING RESEARCH FOR 15Q DISORDERS.
  Expenses $104,372 · revenue $30,602
• FAMILY SUPPORT IN 2025, DUP15Q ALLIANCE CONTINUED TO INCREASE PROGRAMMING TO SUPPORT INDIVIDUALS, THEIR FAMILIES AND CAREGIVERS, AS WELL AS EXTENDED SUPPORTERS. IN THE SPRING, WE LAUNCHED A REGIONAL REPRESENTATIVE PROGRAM TO PROVIDE A LOCAL CONTACT FOR DUP15Q ALLIANCE FAMILIES IN THE US. WE CURRENTLY HAVE 28 REPRESENTATIVES THAT NOT ONLY PROVIDE SUPPORT AND INFORMATION, BUT ALSO HOSTED MULTIPLE LOCAL GATHERINGS FOR DUP15Q FAMILIES TO MEET. THESE REPRESENTATIVES ARE SUPPORTED BY THE FAMILY SUPPORT MANAGER THROUGH QUARTERLY VIRTUAL MEETINGS AND QUARTERLY INFORMATIVE NEWSLETTERS THAT HELP EMPOWER THE TEAM TO ASSIST THEIR FAMILIES. WE FUNDED LICENSED CLINICAL PROFESSIONAL COUNSELOR SESSIONS SO FAMILIES IN CRISIS COULD ACCESS HELP AT NO COST. OUR FAMILY SUPPORT MANAGER PERSONALLY REACHES OUT TO NEWLY DIAGNOSED FAMILIES, GIVING THEM PERSONAL SUPPORT AND CONNECTING THEM TO THEIR COMMUNITY. IN 2025, WE HAD A RECORD NUMBER OF PARENTS ATTENDING A VARIETY OF MONTHLY VIRTUAL CONNECTION CALLS THAT ARE OFFERED THROUGHOUT EACH MONTH. THESE CALLS HELP FORM FRIENDSHIPS AMONG PARENTS WITH CHILDREN WITH DUP15Q SYNDROME, AND GIVE THEM A SAFE SPACE TO LEARN FROM ONE ANOTHER. AS A CONFERENCE YEAR, THERE WERE ONLY 2 BELIEVE FUNDRAISING WALKS - HOWEVER, THEY STILL GAVE FAMILIES THE OPPORTUNITY TO GET TOGETHER, EDUCATE FAMILY AND FRIENDS, AND RAISE FUNDS TO SUPPORT OUR MISSION. OTHER PROGRAMS WERE MAINTAINED, SUCH AS THE COMPASSION EXPERIENCE, VIP KITS, AND THE FAMILIES IN CRISIS/WRAPPED IN LOVE PROGRAM.
  Expenses $409,951 · grants $2,500

What it must file and when

IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.

IRS record

EIN

20-0751232

Tax-exempt status

501(c)(3): Charitable, religious, educational or scientific organization

Foundation status

Publicly supported organization (170(b)(1)(A)(vi))

Donations deductible (Pub 78)

Public charity, 50% deduction limit

Exempt since

2004

Accounting year ends

December

Files

Form 990 or 990-EZ

Category (NTEE)

Voluntary health associations and medical disciplines (G80)

Assets (IRS master file)

$6,375,892

Income (IRS master file)

$7,096,613

Filing history

990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 20-0751232).

Questions about DUP 15Q ALLIANCE

What is the EIN of DUP 15Q ALLIANCE?

The employer identification number (EIN) of DUP 15Q ALLIANCE is 20-0751232.

Is DUP 15Q ALLIANCE tax-exempt?

Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2004.

Are donations to DUP 15Q ALLIANCE tax-deductible?

Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).

Which annual return does DUP 15Q ALLIANCE file?

Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.

When is the next return of DUP 15Q ALLIANCE due?

The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.

When did DUP 15Q ALLIANCE last file with the IRS?

The latest return in the IRS public files is the 990 for the year ended December 2025.

Who is the principal officer of DUP 15Q ALLIANCE?

The 990 for the year ended December 31, 2025 names SARAH THACKER.

Who are the officers and directors of DUP 15Q ALLIANCE?

The 990 for the year ended December 31, 2025 lists 13 people; 2 received compensation from the organization, the highest $125,000 (MIKE PORATH, EXECUTIVE DI).

How much revenue does DUP 15Q ALLIANCE have?

On its 990 for the year ended December 31, 2025 it reported revenue of $7,033,311, expenses of $1,524,547 and total assets of $6,375,892 at year end.

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All nonprofits in MATTHEWS · North Carolina · Voluntary health associations and medical disciplines