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 | |||||
|
Total |
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Calendar year (or fiscal year beginning in) ![]() |
(a) 2016 | (b) 2017 | (c) 2018 | (d) 2019 | (e) 2020 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 1,054,965 | 1,415,266 | 2,757,831 | 2,082,116 | 1,178,574 | 8,488,752 |
| 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 | 1,054,965 | 1,415,266 | 2,757,831 | 2,082,116 | 1,178,574 | 8,488,752 |
| 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).. | 1,659,102 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 6,829,650 | |||||
Calendar year
(or fiscal year beginning in) ![]() |
(a) 2016 | (b) 2017 | (c) 2018 | (d) 2019 | (e) 2020 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 1,054,965 | 1,415,266 | 2,757,831 | 2,082,116 | 1,178,574 | 8,488,752 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 3,119,820 | 4,746 | 11,152 | 13,926 | 2,547 | 3,152,191 |
| 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.).. | 38 | 589 | 627 | |||
| 11 | Total support. Add lines 7 through 10 | 11,641,570 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2016 | (b) 2017 | (c) 2018 | (d) 2019 | (e) 2020 | (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) 2016 | (b) 2017 | (c) 2018 | (d) 2019 | (e) 2020 | (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 in 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 2020 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-2020 |
(iii) Distributable Amount for 2020 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2020 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2019 (reasonable cause required-- explain in Part VI). See instructions. |
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| 3 Excess distributions carryover, if any, to 2020: | ||||
| a From 2015....... | ||||
| b From 2016....... | ||||
| c From 2017....... | ||||
| d From 2018....... | ||||
| e From 2019....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2020 distributable amount | ||||
|
i
Carryover from 2015 not applied (see instructions) |
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| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2020 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2020 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2020, 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 2020. 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 2021. Add lines 3j and 4c. |
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| 8 Breakdown of line 7: | ||||
| a Excess from 2016..... | ||||
| b Excess from 2017..... | ||||
| c Excess from 2018..... | ||||
| d Excess from 2019..... | ||||
| e Excess from 2020..... | ||||
| Facts And Circumstances Test |
|---|
| Return Reference | Explanation |
|---|---|
| SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: | OTHER - 2017 AMOUNT: $ 38. 2020 AMOUNT: $ 500. NET GAIN LOSS ON INVESTMENTS OF LLC - 2020 AMOUNT: $ 89. |
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| Software Version: |
Attach to Form 990 or 990-EZ.
Go to www.irs.gov/Form990 for the latest information.
| Return Reference | Explanation |
|---|---|
| PART III - LINE 1 | IMPORTANTLY, AMPLIFY THE IMPACT OF THAT FUNDING WITH STRATEGIC PROBLEM-SOLVING SUPPORT TO BOTH AWARDEES AND THE BROADER DMD RESEARCH COMMUNITY. TO BEAT DMD, IT'S NOT ENOUGH TO FIND THE BEST RESEARCH; WE ALSO MUST PROACTIVELY IDENTIFY AND KNOCK DOWN HURDLES THAT STAND IN THE WAY OF EFFICIENT DRUG DEVELOPMENT. SINCE INCEPTION, WE HAVE DIRECTED MORE THAN $46M IN FUNDING TO THESE EFFORTS, LEVERAGING BOTH OUR OWN FUNDING AS WELL AS FUNDING FROM OTHER DMD PATIENT ORGANIZATIONS TO IDENTIFY AND SUPPORT THE BEST SCIENCE IN PURSUIT OF TREATMENTS AND A CURE FOR DMD. IN 2020, WE DEDICATED A TOTAL OF $1,543,889 TO OUR PROGRAMMATIC EFFORTS. OF THIS, $1,328,648 WAS DEDICATED TO GRANTS AND ALLOCATIONS, AND $215,241 WAS DEDICATED TO OTHER PROGRAMMATIC EXPENSES. |
| PART III - LINE 4A | WE CONTINUED OUR SUPPORT OF THE DUCHENNE PROGRAM AT UMASS MEDICAL SCHOOL, WHICH WE CREATED IN 2018. THE PROGRAM IS POWERED BY A UNIQUE COLLABORATION AMONG THE MEDICAL, RESEARCH, AND PATIENT COMMUNITIES. FOUNDING CLINIC DIRECTOR DR. BRENDA WONG, HOST INSTITUTION UMASS MEDICAL CENTER AND MEDICAL SCHOOL, AND CHARLEY'S FUND WORK JOINTLY TO ENSURE THAT THE DUCHENNE PROGRAM - THE LARGEST DEDICATED DUCHENNE CLINIC IN THE NORTHEAST US - DELIVERS WORLD-CLASS RESULTS ON THREE KEY GOALS: 1) DELIVER COMPREHENSIVE, INTEGRATED CARE TO PATIENTS; 2) HOST CUTTING-EDGE CLINICAL TRIALS; AND 3) DRIVE ORIGINAL RESEARCH AND DISCOVERIES TO POWER THE NEXT WAVE OF BREAKTHROUGHS. THE DUCHENNE PROGRAM, NOW IN ITS THIRD YEAR, HAS NEARLY 400 PATIENTS IN ITS DIRECT CARE AND CONTINUES TO BENEFIT PATIENTS WORLDWIDE EVEN IF THEY DO NOT ENTER ITS DOORS IN PERSON THROUGH SPONSORED CLINICAL TRIALS, ORIGINAL RESEARCH, AND SHARING BEST PRACTICES IN RESEARCH AND CARE WITH THE BROADER COMMUNITY. |
| PART III - LINE 4B | THROUGH OUR IMPACT INITIATIVE, WE WORK WITH PARTNERS IN THE FIELD TO DEVELOP THEIR SCIENTIFIC PROGRAMS AND TO IDENTIFY RESEARCH ROADBLOCKS AND POTENTIAL SOLUTIONS. THE IMPACT INITIATIVE SPEEDS AND IMPROVES ALL RESEARCH - NOT JUST ONE PARTICULAR THERAPY - BY IDENTIFYING AND THEN SOLVING SYSTEMIC PROBLEMS THAT MAKE DRUG DEVELOPMENT SLOWER, MORE DIFFICULT AND MORE COSTLY. CURRENTLY, THE IMPACT INITIATIVE FOCUSES ON THREE AREAS: 1) IMPROVING OUTCOME MEASURES, 2) IMPROVING PRECLINICAL METHODS AND DECISION-MAKING, AND 3) IMPROVING THE DESIGN, EXECUTION AND ANALYSIS OF CLINICAL TRIALS FOR DMD. WE DEVELOPED THE IMPACT INITIATIVE BECAUSE RIGOROUS SCIENCE - UNDERTAKEN WITH URGENCY AND FOCUS - IS THE ONLY WAY WE GET TO THE OUTCOMES WE AND ALL DUCHENNE FAMILIES WANT: DRUGS THAT WORK, AND WORK WELL. SOLVING THESE FIELD-WIDE PROBLEMS AND IMPROVING OUR TOOLS AND RESOURCES IS AN ABSOLUTE MUST TO GET RESULTS. OUTCOME MEASURES ONE ASPECT OF THE DRUG DEVELOPMENT PROCESS THAT CONCERNS US IS THE LACK OF RELIABLE OUTCOME MEASURES THAT CAN DETERMINE THE EFFICACY OF AN INTERVENTION OVER A REASONABLY SHORT PERIOD OF TIME. IN 2020 CASIMIR, LLC CONTINUED ITS WORK TO ADDRESS THIS IMPORTANT NEED BY DEVELOPING A SERIES OF OUTCOME MEASURES DESIGNED TO QUANTIFY PATIENT QUALITY OF MOVEMENT USING VIDEOS OF BOYS WITH DMD PERFORMING DAILY TASKS. WITH OUR SUPPORT, CASMIR HAS PURSUED ACTIVITIES TO DEVELOP AND REFINE THEIR SCORING SYSTEM, AND GATHER KEY BASELINE DATA NEEDED TO DETERMINE ITS RELIABILITY AND CONCEPT VALIDITY. ALSO IN 2020, WE CONTINUED OUR SUPPORT FOR ELECTRICAL IMPEDANCE MYOGRAPHY (EIM), COLLABORATING WITH EIM FOUNDER DR. SEWARD RUTKOVE TO ASSESS ITS SUITABILITY AS AN OUTCOME MEASURE FOR DMD. EIM UTILIZES A SMALL, HAND-HELD DEVICE TO RUN A HIGH-FREQUENCY CURRENT THROUGH A MUSCLE. IT IS PAINLESS, RELATIVELY INEXPENSIVE, TAKES SECONDS TO PERFORM AND CAN BE USED ON PATIENTS OF ANY AGE. WITH OUR SUPPORT, DR. RUTKOVE HAS COMPLETED CRITICAL STUDIES TO CONFIRM EIM'S RELIABILITY, CONSISTENCY AND ABILITY TO DIFFERENTIATE HEALTHY MUSCLE FROM DISEASED MUSCLE. IN 2020, WE DID NOT PROVIDE FUNDING TO SUPPORT THIS WORK BUT DID DEDICATE STAFF TIME AND GUIDANCE AS WE WORKED WITH DR. RUTKOVE TO HELP OTHER PARTIES INCLUDING LABS WE COLLABORATE WITH IN ANOTHER ONE OF OUR PROGRAMS ADOPT THE APPLICATION OF EIM. WE SUPPORTED THEIR EFFORTS TO RECRUIT PARTICIPANTS FOR ONGOING DATA COLLECTION. PRECLINICAL METHODS ONE MAJOR REASON WE HAVE TROUBLE TRANSLATING PROMISING RESEARCH RESULTS INTO ACTUAL THERAPIES IS THE SHORTCOMINGS OF HOW PRECLINICAL METHODS AND MODELS ARE USED BY DMD RESEARCHERS. OUR "OF MICE AND MEASURES" PROGRAM (OMAM) IS A COLLABORATIVE, ONGOING EFFORT THAT BRINGS TOGETHER EXPERTS FROM ACADEMIA AND INDUSTRY TO IMPROVE THE DECISION-MAKING PROCESS FOR WHICH DRUGS SHOULD ADVANCE TO CLINICAL TESTING. TO BETTER CHARACTERIZE KEY DMD MODELS WE ARE FUNDING A NATURAL HISTORY STUDY AT LEIDEN UNIVERSITY MEDICAL CENTER IN THE NETHERLANDS AND UNIVERSITA DEGLI STUDI DI BARI IN ITALY. THE STUDY IS DESIGNED TO GATHER DATA AND EXPERIENCE THAT CAN HELP DEVELOP BETTER GUIDANCE ON WHEN AND HOW TO DESIGN PRECLINICAL RESEARCH WITH THESE MODELS, AS WELL AS TO UNEARTH DISCREPANCIES IN THE PROCESSES DIFFERENT LABS UNDERTAKE AND THEN PUBLICIZE THE BEST METHODOLOGY TO ENABLE RELIABLE, CONSISTENT RESULTS. CLINICAL TRIALS THE COLLABORATIVE TRAJECTORY ANALYSIS PROJECT (CTAP) IS A COLLABORATIVE EFFORT AMONG KEY STAKEHOLDERS IN THE INDUSTRY, ACADEMIC, AND PATIENT COMMUNITIES TO IMPROVE THE WAY WE DESIGN, EXECUTE, AND ANALYZE CLINICAL TRIALS IN DUCHENNE. IT MAKES USE OF A GROWING BODY OF DMD NATURAL HISTORY AND CLINICAL TRIAL DATA AND CUTTING-EDGE BIOSTATISTICAL ANALYSIS APPROACHES TO IMPROVE OUR UNDERSTANDING OF THE NATURAL HISTORY OF DUCHENNE AND THUS, HOW SPONSORS CAN BETTER DESIGN TRIALS TO IDENTIFY WHEN THEIR TREATMENT SUCCEEDS IN CHANGING THAT NATURAL HISTORY. CTAP WORKS TO PROVIDE 1) ONGOING INVESTIGATION AND PUBLICATION ON KEY QUESTIONS FACING THE FIELD AND IMPACTING CLINICAL TRIAL DESIGN, AND 2) TARGETED SUPPORT FOR SPONSORS DESIGNING AND RUNNING TRIALS TODAY. TO SUPPORT CTAP'S WORK, CHARLEY'S FUND PROVIDES BOTH FUNDING AND ONGOING ADVICE AND GUIDANCE IN ROLES ON THE JOINT STEERING AND COMMUNICATIONS COMMITTEES. IN 2020, ONE CRITICAL RELEASE WAS CTAP'S PUBLICATION DOCUMENTING THE RESULTS OF A STUDY TO ASSESS WHETHER NATURAL HISTORY DATA CAN BE USED TO SUPPLEMENT OR REPLACE PLACEBO ARMS IN CLINICAL TRIALS. |
| FORM 990, PART VI, SECTION A, LINE 2 | BENJAMIN SECKLER, MD (BOARD CHAIRMAN), IS HUSBAND TO TRACY KRAMER SECKLER (BOARD MEMBER). EARL KRAMER (TREASURER), IS FATHER TO TRACY KRAMER SECKLER (BOARD MEMBER) AND KATHE KRAMER CHASE (BOARD MEMBER). KATHE KRAMER CHASE (BOARD MEMBER), AND TRACY KRAMER SECKLER (BOARD MEMBERS), ARE SISTERS. |
| FORM 990, PART VI, SECTION B, LINE 11B | NO REVIEW WAS OR WILL BE CONDUCTED. |
| FORM 990, PART VI, SECTION B, LINE 12C | OFFICERS, DIRECTORS AND KEY EMPLOYEES MUST REVIEW THE POLICY ANNUALLY AND SIGN A DECLARATION THAT THEY HAVE COMPLIED WITH THE POLICY. |
| FORM 990, PART VI, SECTION B, LINE 15 | COMPENSATION OF TOP MANAGEMENT AND OFFICERS OF THE ORGANIZATION IS DEVELOPED IN CONSIDERATION OF PERFORMANCE AND REVIEW OF RELEVANT COMPETITIVE BENCHMARKS AND SUBMITTED TO FINANCE BOARD MEMBERS FOR APPROVAL. |
| FORM 990, PART VI, SECTION C, LINE 19 | THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC UPON REQUEST. |
| Software ID: | |
| Software Version: |