| Category | Amount | Net Investment Income | Adjusted Net Income | Disbursements for Charitable Purposes |
|---|---|---|---|---|
| AUDITING AND TAX | 33,664 | 0 | 0 | 26,500 |
| Identifier | Return Reference | Explanation |
|---|---|---|
| FORM 990-PF; PAGE 7; PART IX-A; LINE 1 | 1 DIRECT RESEARCH ACTIVITIES $217,131 THE SMA FOUNDATION MAINTAINS AN ACTIVE RESEARCH PROGRAM IN SPINAL MUSCULAR ATROPHY IN ORDER TO ACCOMPLISH ITS PRIMARY MISSION TO ACCELERATE THE DEVELOPMENT OF A TREATMENT FOR SMA. THESE STUDIES ARE CONDUCTED THROUGH CONTRACT SERVICES WITH INDUSTRY AND ACADEMIC PARTNERS. FOUNDATION STAFF ANALYZE THE RESULTS, PUBLISH THE FINDINGS IN SCIENTIFIC JOURNALS AND PRESENT THEM AT SCEINTIFIC CONFERENCES. ALL RESEARCH TOOLS, EG, ANIMAL MODELS, ASSAYS, AND DATA THAT ARE GENERATED BY THE FOUNDATION'S OWN INTERNAL RESEARCH, ARE MADE AVAILABLE TO THE GENERAL PUBLIC AND/OR THE SCIENTIFIC COMMUNITY AT MINIMAL TO NO COST. THE LATER INCLUDES THE ENTIRE DATASET OF THE BIOMARKERS FOR SMA STUDY, A MAJOR STUDY LOOKING FOR BIOCHEMICAL CORRELATES OF THE DISEASE THAT CAN BE USED TO EVALUATE AND ACCELERATE CLINICAL TRIALS. THE SMA FOUNDATION FILED A PATENT APPLICATION FOR THE BIOMARKER DATA, IN ORDER TO ENSURE THAT THESE BIOMARKERS WOULD REMAIN OPEN AND ACCESSIBLE TO THE ENTIRE RESEARCH COMMUNITY. MEMBERS OF THE STAFF DEVOTED TIME TO SERVING ON COMMITIEES IN SERVICE OF SMA RESEARCH, E G THE INTERNATIONAL COORDINATING COMMITIEE FOR SMA TASK FORCES ON OUTCOME MEASURES AND STANDARDS OF CARE. THE ICC IS A VOLUNTARY ORGANIZATION ESTABLISHED TO BRING TOGETHER INTERNATIONAL GROUPS WORKING ON SMA FOR THE PURPOSES OF ESTABLISHING STANDARDS FOR COORDINATING CLINICAL TRIALS. MEMBERS OF THE STAFF ALSO PARTICIPATE IN ADVISORY PANELS FOR VARIOUS GOVERNMENT AGENCIES AND NON-PROFIT ORGANIZATIONS. 2 EDUCATIONAL - MATERIALS & RESEARCH FINDINGS $466,212 FOR PATIENTS AND THEIR FAMILIES, SMA FOUNDATION PROVIDES GENERAL MATTERIALS ON SMA AND SMA BIOLOGY, DOCUMENTS DESCRIBING STANDARDS OF CARE, MATERIALS RELATED TO THE CURRENT STATE OF THERAPEUTICS. MOST OF THESE MATERIALS ARE PREPARED BY THE FOUNDATIONS STAFF FOR RESEARCH SCIENTISTS, THE FOUNDATION PREPARES SUMMARIES OF RESEARCH FINDINGS AND USEFUL TOOLS FOR SMA RESEARCHERS. THE FOUNDATION ALSO PREPARES AND DISTRIBUTES RECENT NEWS RELATED TO SMA VIA THE FOUNDATION'S MAILING LISTS IN ORDER TO ENSURE THAT NEW INFORMATION ON SMA IS RAPIDLY DISSEMINATED TO THE COMMUNITY IN ADDITION, THE FOUNDATION PROVIDES INFORMATION ON THE STATE OF SMA RESEARCH TO PATIENTS AND THEIR FAMILIES THAT CALL SMA FOUNDATION. 3 EDUCATIONAL - WEBSITE $20,751 THE SMA FOUNDATION MAINTAINS A WEBSITE WITH GENERAL INFORMATION ABOUT THE FOUNDATIONS RESEARCH PROGRAM AND EDUCATIONAL MATERIALS TARGETED TO BOTH PATIENTS AND THEIR FAMILIES AND TO RESEARCHERS. THE FOUNDATION WIEBSITE IS CONSTANTLY UPDATED BY THE STAFF FOR FURTHER INFORMATION. SEE WWW.SMAFOUNDATION.ORG. TOTAL EXPIENSES FOR DIRECT ACTIVITIES $704,094. | |
| FORM 990-PF; PAGE 9; PART XIII; LINE 7 | ELECTION TO TREAT UNUSED PRIOR YEARS CORPUS DISTRIBUTIONS AS CURRENTYEAR CORPUS DISTRIBUTIONSTHE FOUNDATION RECEIVED CONTRIBUTIONS FROM NONOPERATING PRIVATEFOUNDATIONS WHICH IT EXPENSED OR REDISTRIBUTED. THE FOUNDATION ISELECTING TO TREAT THE $100,000 NOT AS A QUALIFYING DISTRIBUTION BUT AS ADISTRIBUTION OUT OF CORPUS.PURSUANT TO IRS REG. 53.4942(A)-3(C)(2)(IV), THE FOUNDATION HEREBYELECTS TO TREAT, AS A CURRENT CORPUS DISTRIBUTION, THE FOLLOWING UNUSEDPRIOR TAX YEARS' DISTRIBUTIONS THAT WERE TREATED AS CORPUSDISTRIBUTIONS UNDER IRS REG. 53.4942(A)-3(D)(1)(III) IN SUCH PRIOR TAXYEARS:TAX YEAR - 2013, AMOUNT - $100,000 |
| Category / Item | Cost / Other Basis | Accumulated Depreciation | Book Value | End of Year Fair Market Value |
|---|---|---|---|---|
| PROPERTY PLANT AND EQUIPMENT | 53,310 | 16,207 | 37,103 | 37,103 |
| Description | Beginning of Year - Book Value | End of Year - Book Value | End of Year - Fair Market Value |
|---|---|---|---|
| PREPAID FEDERAL EXCISE TAX | 4,904 | 4,904 | |
| SECURITY DEPOSIT | 25,639 | 25,639 |
| Description | Revenue and Expenses per Books | Net Investment Income | Adjusted Net Income | Disbursements for Charitable Purposes |
|---|---|---|---|---|
| SUPPLIES | 14,708 | 0 | 0 | 12,991 |
| TELEPHONE | 16,733 | 0 | 0 | 15,836 |
| DATA PROCESSING | 6,166 | 0 | 0 | 5,823 |
| REGISTRATION FEES | 980 | 0 | 0 | 980 |
| INSURANCE | 29,386 | 0 | 0 | 32,561 |
| PAYROLL PROCESSING | 4,523 | 0 | 0 | 4,523 |
| MEMBERSHIP DUES | 3,224 | 0 | 0 | 3,425 |
| POSTAGE | 493 | 0 | 0 | 493 |
| STAFF DEVELOPMENT | 2,619 | 0 | 0 | 2,665 |
| REPAIRS AND MAINTENANCE | 7,025 | 0 | 0 | 7,025 |
| WEBSITE COST | 312 | 0 | 0 | 351 |
| RELOCATION | 12,857 | 0 | 0 | 320 |
| Description | Revenue And Expenses Per Books | Net Investment Income | Adjusted Net Income |
|---|---|---|---|
| ROYALTY INCOME | 4,775,652 | 4,775,652 | 0 |
| Description | Beginning of Year - Book Value | End of Year - Book Value |
|---|---|---|
| DEFERRED RENT | 28,837 | 0 |
| FEDERAL EXCISE TAX PAYABLE | 15,764 | 0 |
| Category | Amount | Net Investment Income | Adjusted Net Income | Disbursements for Charitable Purposes |
|---|---|---|---|---|
| CONTRACT SERVICES | 217,131 | 0 | 0 | 219,733 |
| Category | Amount | Net Investment Income | Adjusted Net Income | Disbursements for Charitable Purposes |
|---|---|---|---|---|
| FEDERAL EXCISE TAX | 96,223 | 0 | 0 | 0 |