Mila's Miracle Foundation
Nonprofit profile at a glance
- EIN
- 814713372
- IRS 990 coverage
- 2017–2024
- Official website data refreshed
- Jul 2026
- Forms available
- Form 990 2024, Form 990-EZ 2023, Form 990-N 2016
- Location
- Boulder, CO, USA
- Phone
- 2165131205
- Rating
- 78
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Specifically Named Diseases Research
Reported finances
- Revenue
- $706,872
- Expenses
- $493,007
- Assets
- $483,957
- Liabilities
- $0
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
6 people listed
Executive titles in this filing
- JULIA VITARELLO (PRESIDENT)
Highest reported compensation
- JULIA VITARELLO (PRESIDENT): $113,470 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
Our mission is to find and fund paths to a cure for devastating neurological conditions like Batten disease. We are focused on helping to grow the new field of individualized medicines which Mila's story has opened up, and making it accessible to many more across all rare diseases.
What it reported doing in 2024
Clinical trials & programs - to date, the foundation has funded two (2) clinical trials and one (1) clinical program for children with batten disease: 1.) an antisense oligonucleotide (aso) clinical trial - the foundation partnered with boston children's hospital to fund, develop, and administer milasen, the first-ever individualized medicine designed for one person. Led by the pioneering scientist/neurologist, dr. Timothy yu, this aso treatment, which mila received for three years, targeted her individual disease-causing mutation and proved that novel treatments similar to this could be developed and deployed to treat children affected by a number of other rare genetic disorders. 2.) a cln7 gene therapy trial - together, with renowned gene therapist dr. Steven gray, the foundation began the work on a novel gene therapy direct to the brain for children with mila's variant of batten disease, cln7. This promising approach replaces the broken gene with he correct one in a one-time shot into the cerebrospinal fluid. The trial was developed in partnership with ut southwestern, aashi's hope and batten hope, and launched in spring 2021. 3.) neurodegenerative disease clinic - the foundation helped fund and launch a batten & neurological disease clinic at children's hospital Colorado in 2020. The purpose of establishing this center of excellence was to provide families with children affected by neurodegenerative diseases a place to receive specialized multidisciplinary care all in one visit during a single appointment conducted annually and/or semi-annually, based on the child's personalized care plan. Simultaneously, research data is collected to help better understand these diseases and eventually inform future treatment paths.
Operating model
- Revenue model
- Grant-funded. 82% of the money available for current operations came from government grants.
- Distribution model
- Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
The verdict
SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Some filing-based governance responses are negative or unanswered and program spending has declined or grown slowly.
Rating breakdown
- Financial Efficiency: 74
- Transparency & Controls: 92
- Accountability: 90
- Sustainability: 64
- Growth: 0
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 62.7%; rating input score 63
- Program expense ratio: 89.9%; rating input score 90
- Fundraising efficiency: $59.15 raised per $1 spent on fundraising; rating input score 80; 80th 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: Limited
- 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: 6 of 8 controls in place; rating input score 75
- Conflict-of-interest policy: Pass
- Whistleblower policy: Fail
- Document-retention policy: Pass
- CEO compensation review process: Pass
- Other executive compensation review process: NotApplicable
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Fail
Sustainability
- Operating margin: 30.3%; rating input score 84; 84th percentile among comparable filings
- Total-asset coverage ratio: 0.98; rating input score 42; 42nd percentile among comparable filings
- Liabilities to assets ratio: 0; rating input score 91; 91st percentile among comparable filings
- Officer compensation ratio: 23%; rating input score 12; 12th percentile among comparable filings
Growth
- Program expense growth: -9.7% per year; rating input score 0; 5th percentile among comparable filings
- Revenue growth: -19.7% per year; rating input score 0; 1st percentile among comparable filings
- Asset growth: -8.2% per year; rating input score 0; 4th percentile among comparable filings
Details
- What they do: 4 programs and campaigns described on the official site
- Where the money goes: 62.7% of revenue deployed · 89.9% of spending went to programs
- Governance: 5 of 5 board members independent · 6 of 8 filing controls reported
- Programs: 3 filed program accomplishments · $443K in reported program spending
- Leadership: top reported pay $113K · 6 people listed
- Consistency: 19 of 19 current checks pass
- Schedules: 3 filed schedules · includes major donors
- Filing history: 6 filing years from 2017 to 2024
- Contacts: How to reach this organization
- Money network: 2 filed money-flow records
- Related organizations: Filed and resolved organization relationships.
- 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.
- Review — Accountability: Governance controls: 2 of 8 not reported.
- High — Growth: Program expense growth scored 0/100.
- High — Growth: Revenue growth scored 0/100.
- High — Growth: Asset growth scored 0/100.
- Moderate — Sustainability: Total-asset coverage ratio scored 42/100.
- High — Sustainability: Officer compensation ratio scored 12/100.