Milas Miracle Foundation Inc
Public records show a registered, tax-exempt organization in good standing.
What it says it does
THE MISSION OF MILA'S MIRACLE FOUNDATION IS TO FIND AND FUND PATHS TO A CURE FOR BATTEN AND OTHER LIFE-THREATENING NEUROLOGICAL DISORDERS. FAMILIES IN THIS COMMUNITY HAVE BEEN PIVOTAL IN RAISING THE NECESSARY FUNDS AND AWARENESS. TOGETHER, WITH OUR INCREDIBLE SCIENTISTS AND PARTNER ORGANIZATIONS, WE HOPE THAT OUR WORK WILL IMPROVE THE PROGNOSIS OF BATTEN DISEASE AND OTHER NEURODEGENERATIVE DISEASES. THROUGH OUR FUNDRAISING - WHICH INCLUDES GRASSROOTS EFFORTS, INDIVIDUALS AND FAMILY FOUNDATIONS, AND GRANTS - OUR FOUNDATION WORK HAS FOCUSED ON THE FOLLOWING PROGRAM INITIATIVES TO DATE: THE EXPANSION OF INDIVIDUALIZED MEDICINES; CLINICAL TRIALS & PROGRAMS, INCLUDING AN ANTISENSE OLIGONUCLEOTIDE (ASO) CLINICAL TRIAL, A CLN7 GENE THERAPY TRIAL, AND A BATTEN & NEURODEGENERATIVE DISEASE CLINIC; AND BASIC SCIENCE RESEARCH FOR BATTEN DISEASE, INCLUDING A PEDIATRIC CELL ATLAS OF BATTEN PATHOBIOLOGY AND THERAPEUTIC RESPONSE.
- Income
- $706,872
- Spending
- $493,007
- Spent on programs
- 90%
- Reserves
- 3.7 months of spending
- Largest source of income
- government grants, 82%
- Employees
- 2
- Highest pay
- $113,470, president
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Good: 85 out of 100. Higher than 47% of charities in its peer group (medical research, $250k to $1m).
Reserves
20 of 35Spendable reserves would cover 3.7 months of spending.
Debt
20 of 20It owes 0% of what it owns.
Living within its means
15 of 15Income exceeded spending by 30% of income.
Income trend
15 of 15Income rose 3190% on the year before.
Spending floor
15 of 1590% of spending went to programs and raising each dollar of donations cost 2 cents.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Good: 89 out of 100. Higher than 73% of charities in its peer group (medical research, $250k to $1m).
Independent board
25 of 255 of 5 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
0 of 8Reports no written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
12 of 15Its accounts were reviewed or compiled by an independent accountant, but not audited.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (3)
- $275,970 spent. EXPANSION OF INDIVIDUALIZED MEDICINES - AT PRESENT, THE FOUNDATION IS FOCUSED ON HELPING TO GROW THE NEW FIELD OF INDIVIDUALIZED MEDICINES, WHICH MILA'S STORY FIRST OPENED UP. ALONGSIDE MILA'S DOCTOR (DR. TIMOTHY YU) AND HIS TEAM AT BOSTON CHILDREN'S HOSPITAL, WE ARE WORKING COLLABORATIVELY WITH LEADERS IN THE FIELD TO RETHINK THE DRUG DEVELOPMENT PROCESS SO WE CAN SAFELY AND RAPIDLY SCALE N-OF-1 TREATMENTS AND ADDRESS THE GLOBAL HEALTH CRISIS OF RARE GENETIC DISEASES. OUR "MILA TO MILLIONS" INITIATIVE IS PRIORITIZING TWO KEY AREAS TO SUCCESSFULLY BRIDGE THE GAP BETWEEN THE NEED FOR TREATMENTS, THE EXISTING TECHNOLOGY TO DEVELOP THEM, AND THE MISSING INFRASTRUCTURE TO EXPAND ACCESS TO THEM. OUR STRATEGIC PILOTS IN THE UK AND US ARE AIMED AT PROVIDING NEW MODELS OF ACCESS TO INDIVIDUALIZED MEDICINES, AND OUR IMPACT CAMPAIGN IS AIMED AT SHIFTING THE PUBLIC MINDSET TO INFLUENCE THE CRITICAL DECISIONS NEEDED TO PAVE THIS PATHWAY FORWARD. OUR HOPE IS TO GO FROM MILA TO MILLIONS, MAKING INDIVIDUALIZED MEDICINES ACCESSIBLE TO MANY MORE CHILDREN ACROSS THOUSANDS OF RARE DISEASES. EXPANSION OF INDIVIDUALIZED MEDICINES - AT PRESENT, THE FOUNDATION IS FOCUSED ON HELPING TO GROW THE NEW FIELD OF INDIVIDUALIZED MEDICINES, WHICH MILA'S STORY FIRST OPENED UP. ALONGSIDE MILA'S DOCTOR (DR. TIMOTHY YU) AND HIS TEAM AT BOSTON CHILDREN'S HOSPITAL, WE ARE WORKING COLLABORATIVELY WITH LEADERS IN THE FIELD TO RETHINK THE DRUG DEVELOPMENT PROCESS SO WE CAN SAFELY AND RAPIDLY SCALE N-OF-1 TREATMENTS AND ADDRESS THE GLOBAL HEALTH CRISIS OF RARE GENETIC DISEASES. OUR "MILA TO MILLIONS" INITIATIVE IS PRIORITIZING TWO KEY AREAS TO SUCCESSFULLY BRIDGE THE GAP BETWEEN THE NEED FOR TREATMENTS, THE EXISTING TECHNOLOGY TO DEVELOP THEM, AND THE MISSING INFRASTRUCTURE TO EXPAND ACCESS TO THEM. OUR STRATEGIC PILOTS IN THE UK AND US ARE AIMED AT PROVIDING NEW MODELS OF ACCESS TO INDIVIDUALIZED MEDICINES, AND OUR IMPACT CAMPAIGN IS AIMED AT SHIFTING THE PUBLIC MINDSET TO INFLUENCE THE CRITICAL DECISIONS NEEDED TO PAVE THIS PATHWAY FORWARD. OUR HOPE IS TO GO FROM MILA TO MILLIONS, MAKING INDIVIDUALIZED MEDICINES ACCESSIBLE TO MANY MORE CHILDREN ACROSS THOUSANDS OF RARE DISEASES.
- $165,565 spent. BASIC SCIENCE RESEARCH - TO DATE, THE FOUNDATION HAS FUNDED THREE (4) BASIC SCIENCE RESEARCH PROJECTS FOR BATTEN DISEASE IN THE US, EUROPE AND AUSTRALIA. BY SUPPORTING SCIENTISTS WORKING TO CRACK THE CLN7 GENE (AS WELL AS OTHER VARIANTS OF BATTEN DISEASE) THROUGH MEETINGS WITH RESEARCHERS AND PHYSICIANS, AND GRANT FUNDING TO LABS WORKING ON BIOMARKER DISCOVERY AND DATA COLLECTION, WE ARE LEARNING MORE ABOUT THIS DEVASTATING CHILDHOOD CONDITION WITH THE HOPE OF IMPROVING FUTURE TREATMENT OPTIONS. EARLY RESEARCH PROJECTS FUNDED BY THE FOUNDATION HAVE LED TO FINDINGS AND RESULTS PUBLISHED IN THE JOURNAL OF CLINICAL INVESTIGATION, WHICH DEMONSTRATE THAT AN "AAV9/MFSD8 GENE THERAPY IS EFFECTIVE IN PRE-CLINICAL MODELS OF NEURONAL CEROID LIPOFUSCINOSIS TYPE 7 DISEASE". ADDITIONALLY, DONATED TISSUE SAMPLES, FUNDING, AND PATIENT-PARTNERED RESEARCH SUPPORT PROVIDED BY THE FOUNDATION LED TO THE CREATION OF THE FIRST-EVER PEDIATRIC CELL ATLAS OF BATTEN PATHOBIOLOGY AND THERAPEUTIC RESPONSE. THE FOUNDATION'S WORK ON THE CELL ATLAS IS STILL ONGOING AND SUBSEQUENTLY LED TO THE LAUNCH OF THE "LITTLE LEGACIES" BRAIN DONATION PROGRAM WHICH IS BEING OVERSEEN BY THE FOUNDATION IN PARTNERSHIP WITH BOSTON CHILDREN'S HOSPITAL, THE UNIVERSITY OF MARYLAND, THE BRAIN DONOR PROJECT AND THE CHAN ZUCKERBERG INITIATIVE. BASIC SCIENCE RESEARCH - TO DATE, THE FOUNDATION HAS FUNDED THREE (4) BASIC SCIENCE RESEARCH PROJECTS FOR BATTEN DISEASE IN THE US, EUROPE AND AUSTRALIA. BY SUPPORTING SCIENTISTS WORKING TO CRACK THE CLN7 GENE (AS WELL AS OTHER VARIANTS OF BATTEN DISEASE) THROUGH MEETINGS WITH RESEARCHERS AND PHYSICIANS, AND GRANT FUNDING TO LABS WORKING ON BIOMARKER DISCOVERY AND DATA COLLECTION, WE ARE LEARNING MORE ABOUT THIS DEVASTATING CHILDHOOD CONDITION WITH THE HOPE OF IMPROVING FUTURE TREATMENT OPTIONS. EARLY RESEARCH PROJECTS FUNDED BY THE FOUNDATION HAVE LED TO FINDINGS AND RESULTS PUBLISHED IN THE JOURNAL OF CLINICAL INVESTIGATION, WHICH DEMONSTRATE THAT AN "AAV9/MFSD8 GENE THERAPY IS EFFECTIVE IN PRE-CLINICAL MODELS OF NEURONAL CEROID LIPOFUSCINOSIS TYPE 7 DISEASE". ADDITIONALLY, DONATED TISSUE SAMPLES, FUNDING, AND PATIENT-PARTNERED RESEARCH SUPPORT PROVIDED BY THE FOUNDATION LED TO THE CREATION OF THE FIRST-EVER PEDIATRIC CELL ATLAS OF BATTEN PATHOBIOLOGY AND THERAPEUTIC RESPONSE. THE FOUNDATION'S WORK ON THE CELL ATLAS IS STILL ONGOING AND SUBSEQUENTLY LED TO THE LAUNCH OF THE "LITTLE LEGACIES" BRAIN DONATION PROGRAM WHICH IS BEING OVERSEEN BY THE FOUNDATION IN PARTNERSHIP WITH BOSTON CHILDREN'S HOSPITAL, THE UNIVERSITY OF MARYLAND, THE BRAIN DONOR PROJECT AND THE CHAN ZUCKERBERG INITIATIVE.
- $1,799 spent. 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. 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.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated September 30, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated September 10, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2024.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since October 2017.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 7, 2026.
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