Dup 15Q Alliance

Nonprofit profile at a glance

EIN
200751232
IRS 990 coverage
2017–2025
Forms available
Form 990 2025
Location
Matthews, NC, USA
Phone
8553871572
Rating
75
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Specifically Named Diseases

Official website

Reported finances

Revenue
$7,033,311
Expenses
$1,524,547
Assets
$6,375,892
Liabilities
$50,927

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

13 people listed

Highest reported compensation

  • MIKE PORATH (EXECUTIVE DI): $125,000 total reported compensation
  • DYLAN RITTER (DIRECTOR): $110,000 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

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.

What it reported doing in 2025

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.

Operating model

Revenue model
Donor-supported. 94% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 51% for direct work, and 49% for grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 46
  • Transparency & Controls: 94
  • Accountability: 95
  • Sustainability: 81
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 17.5%; rating input score 18
  • Program expense ratio: 80.2%; rating input score 80
  • Fundraising efficiency: $56.21 raised per $1 spent on fundraising; rating input score 81; 81st percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 99.6%; rating input score 100; 45th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 7 of 9 controls in place; rating input score 88
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Limited
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 78.3%; rating input score 97; 97th percentile among comparable filings
  • Total-asset coverage ratio: 4.18; rating input score 78; 78th percentile among comparable filings
  • Liabilities to assets ratio: 0.01; rating input score 80; 80th percentile among comparable filings
  • Officer compensation ratio: 15.4%; rating input score 22; 22nd percentile among comparable filings

Growth

  • Program expense growth: 16.4% per year; rating input score 100; 78th percentile among comparable filings
  • Revenue growth: 33.8% per year; rating input score 100; 95th percentile among comparable filings
  • Asset growth: 29.2% per year; rating input score 100; 92nd percentile among comparable filings

Details

  • Where the money goes: 17.5% of revenue deployed · 80.2% of spending went to programs
  • Governance: 11 of 11 board members independent · 7 of 9 filing controls reported
  • Programs: 3 filed program accomplishments · $1.2M in reported program spending
  • Leadership: top reported pay $125K · 13 people listed
  • Consistency: 26 of 26 current checks pass
  • Schedules: 6 filed schedules · includes major donors and grants
  • Filing history: 8 filing years from 2017 to 2025
  • Contacts: How to reach this organization
  • Money network: 4 filed money-flow records
  • Related organizations: 1 filed related-organization link
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Financial Efficiency: Mission deployment rate scored 18/100.
  • Review — Accountability: Governance controls: Other executive compensation review process not reported.
  • High — Sustainability: Officer compensation ratio scored 22/100.