2014-05-14T12:37:07-05:00 2013-12-31 042571780 ALEXANDER ARONSON FINNING & CO PC 21 EAST MAIN STREET WESTBORO MA 01581 990 2013-01-01 043462719 ALS THERAPY DEVELOPMENT FOUNDATION INC D/B/A ALS THERAPY DEVELOPMENT INSTITUTE ALST 6174417200 300 TECHNOLOGY SQUARE NO 400 CAMBRIDGE MA 02139 STEVE PERRIN CEO/CSO/PRESIDENT 6174417200 2014-05-12 1 JEFFREY CICOLINI CPA P00837468 5083669100 2014-05-12 2013 2015-11-30 17:44:51Z STEVE PERRIN 300 TECHNOLOGY SQUARE NO 400 CAMBRIDGE MA 02139 9354290 0 X WWW.ALS.NET X 1999 MA WE ARE COMMITTED TO CREATING AND LEADING A TRANSPARENT COLLABORATIVE RESEARCH PROCESS THAT INVOLVES ALS PATIENTS TODAY AND HONORS THOSE WHOSE JOURNEY WITH THIS DISEASE HAS ENDED. WE ARE GUIDED BY PASSION, LOVE AND THE SPIRIT OF ENTREPRENEURSHIP UPON WHICH WE WERE FOUNDED. 16 15 62 656 0 0 11018319 8115487 273960 408977 70907 5924 205876 270463 11569062 8800851 0 0 0 0 4426612 4486201 0 0 761813 5279615 5046673 9706227 9532874 1862835 -732023 7256370 6746369 647494 869516 6608876 5876853 X OUR MISSION IS TO IDENTIFY VIABLE TARGETS FOR THERAPY DEVELOPMENT AND EXPEDITIOUSLY MANAGE THE CREATION OF THOSE TREATMENTS THAT WILL ARREST THE SUFFERING OF TODAY'S ALS PATIENTS. 0 0 8294499 408977 THE ALS THERAPY DEVELOPMENT INSTITUTE RECEIVED FDA APPROVAL FOR PHASE IIA TESTING OF GILENYA IN ALS PATIENTS. THE INSTITUTE CREATED A NEW TRANSGENIC MOUSE MODEL BASED A KNOWN MUTATION IN ALS PATIENTS CALLED TAFF15. THE INSTITUTE ALSO DEMONSTRATED THAT EXPRESSING THE MUTANT TAFF15 GENE IN MICE IS EMBRYONIC LETHAL. ENTERED INTO COLLABORATIVE RESEARCH AGREEMENTS TO DEVELOP ANTIBODIES TARGETING MIS-FOLDED SOD1 AND TO DEVELOP SMALL MOLECULE DE STABILIZING MIS FODED SOD1. ALSO ENTERED INTO CRO AGREEMENTS FOR MEDICINAL CHEMISTRY TO IMPROVE THE SOLUBILITY OF SALUBRINAL, A SMALL MOLECULE TARGETING EIF2A AND PROTEIN SYNTHESIS, AND FOR MEDICINAL CHEMISTRY TO CREATE NEW BENZODIAZEPINONE DERIVATIVES THAT TARGET THE ASK1 KINASE AND PROTEIN STRESS PATHWAYS. THE INSTITUTE ALSO RECEIVED IRB APPROVAL AND STARTED PATIENT ENROLLMENT FOR THE GILENYA TRIAL IN FOUR ALS CLINICS. 8294499 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 0 0 0 0 0 1 0 0 0 1 0 0 0 0 1 44 0 62 1 0 0 0 0 0 1 1 0 0 0 0 X 16 15 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 CA IL IN MA AZ X X X INSOURCE SERVICES INC 7812351490 148 LINDEN STREET WELLESLEY MA 02482 DR STANLEY H APPEL MD BOARD MEMBER 2.50 X 0 0 0 ALEXANDER CAPPELLO BOARD MEMBER 2.50 X 0 0 0 SPIROS JAMAS SCD BOARD MEMBER 2.50 X 0 0 0 KEITH MELANSON BOARD MEMBER 2.50 X 0 0 0 LESLIE MICHELSON JD BOARD MEMBER 2.50 X 0 0 0 JOHN B HEYWOOD PHD SCD BOARD MEMBER 2.50 X 0 0 0 AUGIE NIETO CHAIRMAN AND BOARD MEMBER 2.50 X X 0 0 0 ROB RODIN BOARD MEMBER 2.50 X 0 0 0 STEVEN PERRIN PHD CEO/CSO/PRES., VICE CHAIRMAN 40.00 X X 365317 0 18799 JAMES ALLEN HEYWOOD BOARD MEMBER 2.50 X 0 0 0 THEODORE REICH JD CPA TREASURER AND BOARD MEMBER 2.50 X X 0 0 0 JOHN SUTHERLAND SECRETARY AND BOARD MEMBER 2.50 X X 0 0 0 STEVEN FOWLER BOARD MEMBER 2.50 X 0 0 0 ROBERT SEPUCHA BOARD MEMBER 2.50 X 0 0 0 JENNY DWYER BOARD MEMBER 2.50 X 0 0 0 MIKE SMITH BOARD MEMBER 2.50 X 0 0 0 ALAN GILL VP RESEARCH AND DEVELOPMENT 40.00 X 159351 0 18550 BASHAR AL-NAKHALA VICE PRESIDENT IT 40.00 X 117235 0 18546 JOHN LINCECUM DIRECTOR OF DISCOVERY BIOLOGY 40.00 X 140667 0 17979 FERNANDO VIEIRA DIR. OF RESEARCH 40.00 X 139326 0 18597 VLADIMIR MOROZOV SENIOR SCIENTIST 40.00 X 112230 0 16929 PATRICIA TANSKI FORMER VP OF DEVELOPMENT 40.00 X 114503 0 1387 1148629 0 110787 7 1 1 0 INSOURCE SERVICES INC PO BOX 427 NEWTON UPPER FALLS MA 02464 BOOKKEEPING & FINANCE & HR & IT 351656 PARTNERS HEALTH CARE (MGH RESEARCH) 125 HIGH STREET BOSTON MA 02241 CONTRACT RESEARCH - SCIENCE 233255 2 2542004 5573483 65001 8115487 PHARMACEUTICAL CONTRAC 541700 408977 408977 408977 5924 5924 823902 2542004 553439 270463 270463 8800851 408977 0 276387 384116 330339 11524 42253 3391391 2843799 192506 355086 31489 27207 718 3564 385553 332483 12559 40511 293652 255789 6330 31533 64489 63289 1200 29279 29279 537854 369938 22590 145326 19557 18392 1165 83036 77047 2172 3817 174350 127692 4946 41712 1860406 1780312 74491 5603 149434 109277 9857 30300 94744 77246 12071 5427 9128 9128 197218 170376 5981 20861 TESTING AND LAB EXPENSE 1655276 1655276 MISCELLANEOUS 63613 16545 16878 30190 BAD DEBT 49000 49000 PROGRAM SUPPLIES AND MA 32427 19531 10711 2185 26862 25122 660 1080 9532874 8294499 476562 761813 2482395 2237218 1044907 1473850 2981555 1592064 49000 629769 65452 92182 2542452 1951145 556990 591307 76071 129979 7256370 6746369 596889 611613 64825 50605 193078 647494 869516 X 4527321 4294268 2081555 1582585 6608876 5876853 7256370 6746369 -732023 0 X X 0 1 X 1 0 X 8455858 6927606 6444164 8936764 8115487 38879879 8455858 6927606 6444164 8936764 8115487 38879879 22095179 16784700 48591 30729 15882 70907 5924 172033 310601 704819 782346 205876 270463 2274105 41326017 98000 0.40620 0.86320 X PART II - B, LINE 10 OTHER INCOME REPRESENTS NET SPECIAL EVENT REVENUE, EXCLUDING CONTRIBUTIONS. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 24950 24950 9507924 9532874 626644 156661 0 0 521962 536554 635311 626644 2320471 3480707 50645 37902 34728 24950 148225 130491 134139 158828 156661 580119 870179 375683 132398 243285 2166769 1818747 348022 591307 X 8832261 31410 31410 8800851 0 8800851 9564284 31410 31410 9532874 0 9532874 PART X, LINE 2: ALS TDI ACCOUNTS FOR UNCERTAINTY IN INCOME TAXES IN ACCORDANCE WITH ASC TOPIC, INCOME TAXES. THIS STANDARD CLARIFIES THE ACCOUNTING FOR UNCERTAINTY IN TAX POSITIONS AND PRESCRIBES A RECOGNITION THRESHOLD AND MEASUREMENT ATTRIBUTE FOR THE FINANCIAL STATEMENT REGARDING A TAX POSITION TAKEN OR EXPECTED TO BE TAKEN IN A TAX RETURN. ALS TDI HAS DETERMINED THAT THERE ARE NO UNCERTAIN TAX POSITIONS WHICH QUALIFY FOR EITHER RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS AT DECEMBER 31, 2013. THE INFORMATIONAL RETURNS OF ALS TDI ARE SUBJECT TO EXAMINATION BY THE FEDERAL AND STATE JURISDICTIONS AND GENERALLY REMAIN OPEN FOR THE MOST RECENT THREE YEARS. THESE RETURNS ARE GENERALLY SUBJECT TO EXAMINATION BY INTERNAL REVENUE SERVICE, MASSACHUSETTS, CALIFORNIA, INDIANA, ILLINOIS, AND MICHIGAN TAX AUTHORITIES FOR THE LAST THREE YEARS. TRI STATE TREK 459314 421764 37550 13043 42457 54796 WHITE COAT AFFAIR - BOSTON GALA 252125 125000 127125 71030 35181 51 2654467 1995240 659227 4597 332335 3365906 2542004 823902 13043 118084 422312 553439 270463 X 1 1 X X X X 0 0 0 0 0 0 0 0 0 STEVEN PERRIN PHD CEO/CSO/PRES., VICE CHAIRMAN 365317 0 0 0 0 0 0 0 18799 0 384116 0 0 0 ALAN GILL VP RESEARCH AND DEVELOPMENT 159351 0 0 0 0 0 0 0 18550 0 177901 0 0 0 BASHAR AL-NAKHALA VICE PRESIDENT IT 117235 0 0 0 0 0 0 0 18546 0 135781 0 0 0 JOHN LINCECUM DIRECTOR OF DISCOVERY BIOLOGY 140667 0 0 0 0 0 0 0 17979 0 158646 0 0 0 FERNANDO VIEIRA DIR. OF RESEARCH 139326 0 0 0 0 0 0 0 18597 0 157923 0 0 0 VLADIMIR MOROZOV SENIOR SCIENTIST 112230 0 0 0 0 0 0 0 16929 0 129159 0 0 0 PATRICIA TANSKI FORMER VP OF DEVELOPMENT 114503 0 0 0 0 0 0 0 1387 0 115890 0 0 0 PART I, LINE 1A THE CEO HAS VERBAL AUTHORIZATION TO FLY FIRST CLASS AT HIS DISCRETION. IN GENERAL, HE ONLY FLIES FIRST CLASS WHEN THE FLIGHT IS LONGER THAN 5 1/2 HRS. X 8 910 SELLING PRICE X AUCTION ITEMS 35 35930 SELLING PRICE X FUNDRAISING S 56 24767 SELLING PRICE X OTHER 20 3394 SELLING PRICE 0 1 0 FORM 990, PART VI, SECTION A, LINE 2 JAMES HEYWOOD, BOARD MEMBER, IS THE SON OF JOHN HEYWOOD, MEMBER OF THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION B, LINE 11 FORM 990 IS REVIEWED BY THE CHIEF FINANCIAL OFFICER AND THEN APPROVED BY THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION B, LINE 12C ALS TDI HAS A WRITTEN CONFLICT OF INEREST POLICY WHICH REQUIRES ANNUAL SIGNOFFS BY OFFICERS, DIRECTORS AND KEY EMPLOYEES. FORM 990, PART VI, SECTION B, LINE 15 THE PROCESS TO DETERMINE THE COMPENSATION OF THE PRESIDENT WAS LAST UNDERTAKEN AT THE END OF 2011. THE PROCESS CONSISTED OF EVALUATING COMPARABLE DATA FOR FUNCTIONALLY SIMILAR POSITIONS AT SIMILAR ORGANIZATIONS, ALONG WITH THE REVIEW AND APPROVAL BY THE EXECUTIVE COMPENSATION COMMITTEE OF THE BOARD OF DIRECTORS WHICH IS COMPRISED OF INDEPENDENT MEMBERS. APPROVALS AND DISCUSSIONS WERE FORMALLY DOCUMENTED BY MEETING MINUTES FOR PRESENATION TO THE FULL BOARD FOR APPROVAL. FORM 990, PART VI, SECTION B. LINE 15B: THE PROCESS TO ESTABLISH COMPENSATION OF OTHER OFFICERS AND KEY EMPLOYEES IS COMPLETED ON AN ANNUAL BASIS BY EVALUATING COMPARABLE DATA FOR FUNCTIONALLY SIMILAR POSITIONS AT SIMILAR ORGANIZATIONS, PRESENTING RECOMMENDATIONS TO THE EXECUTIVE COMPENSATION COMMITTEE OF THE BOARD OF DIRECTORS WHICH IS COMPRISED OF INDEPENDENT MEMBERS AND DOCUMENTING SUCH DISCUSSIONS IN THE BOARD MINUTES. FORM 990, PART VI, SECTION C, LINE 19 GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE MADE AVAILABLE ON THE ORGANIZATION'S WEB SITE. FINANCIAL STATEMENTS ARE ALSO AVAILABLE BY MAIL UPON REQUEST. FORM 990, PART XII, LINE 2C: DURING 2013, THE ORGANIZATION DID NOT CHANGE THE WAY IN WHICH ITS COMMITTEE ASSUMES RESPONSIBILITY FOR OVERSIGHT OF THE AUDIT, ITS FINANCIAL STATEMENTS AND SELECTION OF AN INDEPENDENT ACCOUNTANT. ANELIXIS THERAPEUTICS LLC 300 TECHNOLOGY SQUARE CAMBRIDGE MA 02139 TO ASSIST IN PROVIDING MECHANISMS TO ALS TDI TO SUPPORT RESEARCH AND DISCOVE DE 0 0 ALS THERAPY DEVELOPMENT FOUNDATION INC NEUROCATHARSIS THERAPEUTICS LLC 300 TECHNOLOGY SQUARE CAMBRIDGE MA 02139 TO ASSIST IN PROVIDING MECHANISMS TO ALS TDI TO SUPPORT RESEARCH AND DISCOVE DE 0 0 ANELIXIS THERAPEUTICS LLC NEUROSTYSIS THERAPEUTICS LLC 300 TECHNOLOGY SQUARE CAMBRIDGE MA 02139 TO ASSIST IN PROVIDING MECHANISMS TO ALS TDI TO SUPPORT RESEARCH AND DISCOVE DE 0 0 ANELIXIS THERAPEUTICS LLC PART I, IDEFTIFICATION OF DISREGARDED ENTITIES: NAME OF DISREGARDED ENTITY: ANELIXIS THERAPEUTICS, LLC PRIMARY ACTIVITY: TO ASSIST IN PROVIDING MECHANISMS TO ALS TDI TO SUPPORT RESEARCH, SCIENTIFIC DISCOVERIES, INVENTIONS AND PROCESSES TO BE DEVELOPED, APPLIED OR PATENTED. ANELIXIS THERAPEUTICS, LLC WAS ALSO ESTABLISHED AS A MEANS TO GENERATE FUNDS TO SUPPORT DISCOVERIES AND PATENTS RELATED TO THE MISSION OF ALS TDI. PART I, IDEFTIFICATION OF DISREGARDED ENTITIES: NAME OF DISREGARDED ENTITY: NEUROCATHARSIS THERAPEUTICS, LLC PRIMARY ACTIVITY: TO ASSIST IN PROVIDING MECHANISMS TO ALS TDI TO SUPPORT RESEARCH, SCIENTIFIC DISCOVERIES, INVENTIONS AND PROCESSES TO BE DEVELOPED, APPLIED OR PATENTED. NEUROCATHARSIS THERAPEUTICS, LLC WAS ALSO ESTABLISHED AS A MEANS TO GENERATE FUNDS TO SUPPORT DISCOVERIES AND PATENTS RELATED TO THE MISSION OF ALS TDI. PART I, IDEFTIFICATION OF DISREGARDED ENTITIES: NAME OF DISREGARDED ENTITY: NEUROTYSIS THERAPEUTICS, LLC PRIMARY ACTIVITY: TO ASSIST IN PROVIDING MECHANISMS TO ALS TDI TO SUPPORT RESEARCH, SCIENTIFIC DISCOVERIES, INVENTIONS AND PROCESSES TO BE DEVELOPED, APPLIED OR PATENTED. NEUROSTYSIS THERAPEUTICS, LLC WAS ALSO ESTABLISHED AS A MEANS TO GENERATE FUNDS TO SUPPORT DISCOVERIES AND PATENTS RELATED TO THE MISSION OF ALS TDI.