Attach to Form 990 or Form 990-EZ.
Go to
www.irs.gov/Form990 for instructions and the latest information.
| (i) Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 10 above (see instructions)) | (iv) Is the organization listed in your governing document? | (v) Amount of monetary support (see instructions) | (vi) Amount of other support (see instructions) | |
|---|---|---|---|---|---|---|
| Yes | No | |||||
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Total |
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Calendar year
(or fiscal year beginning in)
![]() |
(a) 2020 | (b) 2021 | (c) 2022 | (d) 2023 | (e) 2024 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 193,610 | 263,117 | 649,773 | 21,412 | 706,839 | 1,834,751 |
| 2 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf .... | ||||||
| 3 | The value of services or facilities furnished by a governmental unit to the organization without charge.. | ||||||
| 4 | Total. Add lines 1 through 3 | 193,610 | 263,117 | 649,773 | 21,412 | 706,839 | 1,834,751 |
| 5 | The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f) .. | 930,003 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 904,748 | |||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2020 | (b) 2021 | (c) 2022 | (d) 2023 | (e) 2024 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 193,610 | 263,117 | 649,773 | 21,412 | 706,839 | 1,834,751 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 400 | 138 | 86 | 75 | 33 | 732 |
| 9 | Net income from unrelated business activities, whether or not the business is regularly carried on.. | ||||||
| 10 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. | ||||||
| 11 | Total support. Add lines 7 through 10 | 1,835,483 | |||||
Calendar year (or fiscal
year beginning in) ![]() |
(a) 2020 | (b) 2021 | (c) 2022 | (d) 2023 | (e) 2024 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . | ||||||
| 2 | Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose | ||||||
| 3 | Gross receipts from activities that are not an unrelated trade or business under section 513 ..... | ||||||
| 4 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf... | ||||||
| 5 | The value of services or facilities furnished by a governmental unit to the organization without charge | ||||||
| 6 | Total. Add lines 1 through 5 | ||||||
| 7a | Amounts included on lines 1, 2, and 3 received from disqualified persons | ||||||
| b | Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year. | ||||||
| c | Add lines 7a and 7b.. | ||||||
| 8 | Public support. (Subtract line 7c from line 6.) | ||||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2020 | (b) 2021 | (c) 2022 | (d) 2023 | (e) 2024 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6... | ||||||
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. | ||||||
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975. | ||||||
| c | Add lines 10a and 10b. | ||||||
| 11 | Net income from unrelated business activities not included on line 10b, whether or not the business is regularly carried on. | ||||||
| 12 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) .. | ||||||
| 13 | Total support. (Add lines 9, 10c, 11, and 12.).. | ||||||
| Section A - Adjusted Net Income | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Net short-term capital gain | 1 | ||||
| 2 | Recoveries of prior-year distributions | 2 | ||||
| 3 | Other gross income (see instructions) | 3 | ||||
| 4 | Add lines 1 through 3 | 4 | ||||
| 5 | Depreciation and depletion | 5 | ||||
| 6 | Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) | 6 | ||||
| 7 | Other expenses (see instructions) | 7 | ||||
| 8 | Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) | 8 | ||||
| Section B - Minimum Asset Amount | (A) Prior Year |
(B) Current Year (optional) |
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| 1 | Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): | 1 | ||||
| a | Average monthly value of securities | 1a | ||||
| b | Average monthly cash balances | 1b | ||||
| c | Fair market value of other non-exempt-use assets | 1c | ||||
| d | Total (add lines 1a, 1b, and 1c) | 1d | ||||
| e |
Discount claimed for blockage or other factors (explain in detail in Part VI): |
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| 2 | Acquisition indebtedness applicable to non-exempt use assets | 2 | ||||
| 3 | Subtract line 2 from line 1d | 3 | ||||
| 4 | Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions). | 4 | ||||
| 5 | Net value of non-exempt-use assets (subtract line 4 from line 3) | 5 | ||||
| 6 | Multiply line 5 by 0.035 | 6 | ||||
| 7 | Recoveries of prior-year distributions | 7 | ||||
| 8 | Minimum Asset Amount (add line 7 to line 6) | 8 | ||||
| Section C - Distributable Amount | Current Year | |||||
| 1 | Adjusted net income for prior year (from Section A, line 8, Column A) | 1 | ||||
| 2 | Enter 85% of line 1 | 2 | ||||
| 3 | Minimum asset amount for prior year (from Section B, line 8, Column A) | 3 | ||||
| 4 | Enter greater of line 2 or line 3 | 4 | ||||
| 5 | Income tax imposed in prior year | 5 | ||||
| 6 | Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) | 6 | ||||
| Section D - Distributions | Current Year | |
|---|---|---|
| 1 Amounts paid to supported organizations to accomplish exempt purposes | 1 | |
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
2 | |
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | 3 | |
| 4 Amounts paid to acquire exempt-use assets | 4 | |
| 5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI) | 5 | |
| 6 Other distributions (describe in Part VI). See instructions | 6 | |
| 7Total annual distributions. Add lines 1 through 6. | 7 | |
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
8 | |
| 9 Distributable amount for 2024 from Section C, line 6 | 9 | |
| 10 Line 8 amount divided by Line 9 amount | 10 | |
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2024 |
(iii) Distributable Amount for 2024 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2024 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2024 (reasonable cause required-- explain in Part VI).
See instructions. |
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| 3 Excess distributions carryover, if any, to 2024: | ||||
| a From 2019....... | ||||
| b From 2020....... | ||||
| c From 2021....... | ||||
| d From 2022....... | ||||
| e From 2023....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2024 distributable amount | ||||
|
i
Carryover from 2019 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2024 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2024 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2024, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions. |
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|
6
Remaining underdistributions for 2024. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions. |
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7 Excess distributions carryover to 2025. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2020..... | ||||
| b Excess from 2021..... | ||||
| c Excess from 2022..... | ||||
| d Excess from 2023..... | ||||
| e Excess from 2024..... | ||||
| Facts And Circumstances Test |
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| Return Reference | Explanation |
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| Software ID: | |
| Software Version: |
| Return Reference | Explanation |
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| FORM 990 - ORGANIZATION'S MISSION | 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. |
| FORM 990, PAGE 2, PART III, LINE 4A | 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. |
| FORM 990, PAGE 2, PART III, LINE 4B | 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. |
| FORM 990, PAGE 2, PART III, LINE 4C | 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. |
| FORM 990, PAGE 6, PART VI, LINE 2 | JULIA VITARELLO ADAM VITARELLO PRESIDENT VICE CHAIR FAMILY RELATIONSHIP |
| FORM 990, PAGE 6, PART VI, LINE 11B | A COPY OF FORM 990 WILL BE PROVIDED TO EACH MEMBER OF THE GOVERNING BODY, VIA EMAIL OR AT A BOARD MEETING, PRIOR TO SUBMISSION TO THE INTERNAL REVENUE SERVICE. |
| FORM 990, PAGE 6, PART VI, LINE 12C | MEMBERS OF THE BOARD ARE ASKED TO DISCLOSE AND PRESENT ON POTENTIAL CONFLICTS TO THE FULL BOARD OF DIRECTORS DURING REGULARLY SCHEDULED MEETINGS. MEETINGS ADJOURN TO AN EXECUTIVE SESSION, AS NOTED IN THE MINUTES, AT WHICH TIME THE REMAINING DIRECTORS REVIEW, DISCUSS AND VOTE TO DETERMINE IF A CONFLICT OF INTEREST EXISTS AND IF ANY FURTHER ACTION NEEDS TO BE TAKEN. DIRECTORS AND OFFICERS ARE ASKED TO SIGN AN AFFIRMATION STATEMENT ANNUALLY AND CONDUCT PERIODIC REVIEWS TO ENSURE THE ORGANIZATION OPERATES IN A MANNER CONSISTENT WITH CHARITABLE PURPOSES AND DOES NOT ENGAGE IN ACTIVITIES THAT COULD JEOPARDIZE ITS TAX-EXEMPT STATUS. |
| FORM 990, PAGE 6, PART VI, LINE 15A | THE MMF BOARD OF DIRECTORS (EXCLUDING JULIA VITARELLO) REVIEWED AND APPROVED JULIA'S SALARY (AS CEO), MAGGIE'S SALARY (AS KEY EMPLOYEE), AND CHRIS' SALARY (AS CONTRACT WORKER) VIA WRITTEN CONSENT (IN LIEU OF MEETING) THAT LAST TOOK PLACE ON AUGUST 16, 2024. THE APPROVED ACTIONS VIA WRITTEN CONSENT WERE THEN DOCUMENTED IN THE MINUTES OF THE NEXT BOARD MEETING WHICH TOOK PLACE ON SEPTEMBER 11, 2024. LEADING UP TO THE APPROVAL, THE NONFAMILY MEMBERS OF THE MMF BOARD OF DIRECTORS PARTICIPATED IN PRIVATE DISCUSSIONS TO DETERMINE A BASIS FOR JULIA'S SALARY, AND SEPERATE DISCUSSIONS TOOK PLACE BETWEEN JULIA AND THE OTHER MMF BOARD MEMBERS TO DETERMINE A BASIS FOR MAGGIE AND CHRIS' SALARIES. THE PROCESS USED TO ESTABLISH REASONABLE COMPENSATION WAS DETERMINED BY SEVERAL FACTORS INCLUDING, BUT NOT LIMITED TO: CENSUS DATA AND COMPENSATION REPORTS FOR COMPARABLE INDUSTRY POSITIONS, ANNUAL COST OF LIVING ADJUSTMENTS, JOB DESCRIPTION, ANNUAL PERFORMANCE REVIEW, ORG BUDGET. |
| FORM 990, PAGE 6, PART VI, LINE 19 | GOVERNING DOCUMENTS ARE AVAILABLE UPON REQUEST. |
| FORM 990, PART IX, LINE 11G | ADMINISTRATION EXPENSES:PROFE 0 4,489 0 PROFESSIONAL FEES - PGM:OTHER 100,000 0 0 EMPLOYEE EXPENSES - PGM:COMPE 56,000 0 0 PROFESSIONAL FEES - PGM:VIDEO 70,000 0 0 PROFESSIONAL FEES - PGM:PHOTO 11,381 0 0 PROFESSIONAL FEES - PGM:EQUIP 2,617 0 0 TRIAL COSTS - PGM:BASIC SCIEN 2,000 0 0 TOTAL 241,998 4,489 0 |
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| Software Version: |