Form 990 for tax year 2024

Totals

Total revenue

$988,446

Total expenses

$820,079

Contributions and grants received

$580,723

Grants paid

$371,359

Program service revenue

$10,762

Investment income

$10,162

Other revenue

$386,799

Total assets, end of year

$909,630

Total liabilities, end of year

$146,204

Net assets or fund balances, end of year

$763,426

Program services expenses (Part IX)

$679,564

Management and general expenses

$86,263

Fundraising expenses

$54,252

Program service expenses (Part III)

$679,564

Program services were 82.9% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2024

• 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 2024, WE HELPED DIRECT DONATIONS DO BEGIN A NATURAL HISTORY STUDY, RECRUITING FAMILIES TO PROVIDE DATA AND BIOLOGICAL SAMPLES IN AN ONGOING STUDY OF DUP15Q AND HOW SYMPTOMS CHANGE OVER TIME. WE FUNDED MULTIPLE RESEARCH GRANTS, COMMITTING FOUR TIMES AS MUCH MONEY TO RESEARCH IN 2024 AS WE DID IN 2023. AFTER DUE DILIGENCE IN EXAMINING THEIR WORK, WE COMMITTED TO PARTNERSHIPS WITH TWO DIFFERENT DRUG DEVELOPMENT COMPANIES WORKING SPECIFICALLY ON TARGETED GENETIC TREATMENTS FOR DUP 15Q SYNDROME. WE RAISED MONEY FOR THESE PROJECTS WITH DEDICATED CAMPAIGNS: OUR FIRST GALA IN PHILADELPHIA; A NATIONAL COMPANY MATCHING EVENT LED BY A BOARD MEMBER; AND A FUNDRAISER IN TEXAS. CLINICS - WE PROVIDED SUPPORT TO OUR NETWORK OF 14 CLINICS THROUGH PER PATIENT PAYMENTS TO OFFSET COSTS OF CARE, THROUGH SUPPORT TO FAMILIES GOING TO CLINICS WITH FAMILY TRAVEL GRANTS, AND THROUGH A STAFF MEMBER TO OVERSEE THE NETWORK, CONVENE MONTHLY DISCUSSIONS AMONG CLINICIANS ACROSS THE COUNTRY, AND OFFER GENETIC COUNSELING TO NEWLY DIAGNOSED FAMILIES. THESE CLINICS CONNECT FAMILIES WITH HIGHLY SPECIALIZED MEDICAL PROVIDERS IN A VARIETY OF FIELDS WHO HAVE EXTENSIVE EXPERIENCE TREATING THIS RARE DISORDER. OUR COLLABORATION WITH THE ANGELMAN SYNDROME FOUNDATION IN THE CLINICS ALLOWS US TO EXPAND OUR CLNICAL FOOTPRINT, IMPROVE ACCESS TO CARE, AND BRING TOGETHER A LARGER GROUP OF MEDICAL AND RESEARCH PROFESSIONALS AROUND THE WORLD.

  Expenses $452,815 · Grants $360,416

• 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 50 SPEAKERS AND 30 SESSIONS, FOSTERING COLLABORATION, SHARING INSIGHTS, AND DRIVING FORWARD NEW APPROACHES TO IMPROVING CARE AND ADVANCING RESEARCH FOR 15Q DISORDERS.

  Expenses $123,408 · Revenue $10,762

• EDUCATION AND OUTREACH PROGRAMS: FAMILY SUPPORT 2024 MARKED OUR 30TH YEAR AS AN ORGANIZATION, PROVIDING PERSONAL CONNECTIONS, SUPPORT, COMMUNITY AWARENESS, AND EDUCATION TO FAMILIES AND CAREGIVERS OF THOSE AFFECTED BY DUP15Q SYNDROME. WE CREATED AND DISTRIBUTED A 30TH ANNIVERSARY EDITION OF THE MIRROR, OUR NEWSLETTER. WE FUNDED OVER 150 LICENSED CLINICAL PROFESSIONAL COUNSELOR SESSIONS SO FAMILIES IN CRISIS COULD ACCESS HELP AT NO COST. OUR FAMILY SUPPORT MANAGER EXTENDED THE SUPPORT OFFERED TO NEW DUP15Q ALLIANCE FAMILIES BY INITIATING MONTHLY CONNECTION CALLS ON A VARIETY OF TOPICS AT A VARIETY OF TIMES, HELPING PARENTS OF NEWLY DIAGNOSED CHILDREN FORM FRIENDSHIPS AND LEARN FROM MORE EXPERIENCED PARENTS; AND WE COMPLETED AND LAUNCHED A TRANSITION TO ADULTHOOD ROAD MAP WITH RESOURCES, EDUCATION, AND TIPS FOR CAREGIVERS. WE HAD OUR MOST SUCCESSFUL YEAR OF FAMILY GATHERINGS HELD AT 8 "BELIEVE WALKS" ACROSS THE COUNTRY (IN TEXAS, CALIFORNIA, COLORADO, MINNESOTA, MASSACHUSETTS, INDIANA, ILLINOIS AND TENNESSEE) ALLOWING HUNDREDS OF OUR FAMILIES THE OPPORTUNITY TO GET TOGETHER, EDUCATE FAMILY AND FRIENDS, AND RAISE FUNDS TO SUPPORT OUR MISSION.

  Expenses $103,341 · Grants $10,943

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those.

Grants on this return

• VARIOUS

  $246,359

  RESEARCH

• UNC CHAPEL HILL

  $50,000

  DREAM FUND GRANT

• CHILDREN'S HOSPITAL LOS ANGELES

  $50,000

  NYS NDD PROGRAM

• WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY

  $25,000

  DREAM FUND GRANT

Provenance

Return type

form_990

Tax year

2024

Filed

20 August 2025

IRS schema version

2024v5.0

Source object

202543219349305099

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