2015-05-15T09:33:13-05:00 2014-12-31 042571780 ALEXANDER ARONSON FINNING & CO PC 21 EAST MAIN STREET WESTBORO MA 01581 990 2014-01-01 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 2015-05-11 1 JEFFREY CICOLINI CPA P00837468 5083669100 2015-05-11 2014 2016-03-07 17:11:31Z STEVE PERRIN 300 TECHNOLOGY SQUARE NO 400 CAMBRIDGE MA 02139 15128185 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. 15 14 66 875 0 0 8115487 13405432 408977 435914 5924 5151 270463 473288 8800851 14319785 0 0 0 0 4486201 5252740 0 0 939459 5046673 6236670 9532874 11489410 -732023 2830375 6746369 11349070 869516 2641842 5876853 8707228 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 9970297 435914 THE ALS THERAPY DEVELOPMENT INSTITUTE COMPLETED PHASE IIA TRIAL OF GILENYA IN ALS PATIENTS. THE TRIAL REACHED ALL ENDPOINTS FOR SAFETY AND TOLERABILITY SUCCESSFULLY. THE INSTITUTE PUBLISHED TWO SCIENTIFIC PAPERS, A REVIEW ARTICLE IN NATURE IN BEST PRACTICES TO IMPROVE PRECLINICAL DATA AND A SECOND PAPER IN PLOS ON THE LACK OF POSITIVE DATA ON DEXPRAMIPEXOLE IN SOD1 ANIMALS. THE INSTITUTE VALIDATED POSITIVE BENEFIT OF AN ANTI SOD1 ANTIBODY, NI-204B IN SLOWING DOWN DISEASE PROGRESSION IN SOD1 MICE IN COLLABORATION WITH NEURIMMUNE. THE TRANSLATIONAL MEDICINE TEAM LAUNCHED THE PRECISION MEDICINE PROGRAM ENROLLING 200 PATIENTS FOR SELF REPORTED HEALTH METRICS, UNBIASED ASSESSMENT OF WELLNESS, GENOME SEQUENCING, AND INDUCED PLURIPOTENT STEM CELL DEVELOPMENT FROM SKIN BIOPSIES. THE SCIENCE TEAM ALSO COMPLETED THE DEVELOPMENT AND PRECLINICAL OPTIMIZATION OF A HUMAN ANTI BODY TARGETING CD40L, JB5 WHICH IS NOW READY FOR CLINICAL DEVELOPMENT.THE DEVELOPMENT AND ACCOUNTS PAYABLE TEAMS INTEGRATED AUGIE'S QUEST STAFF AND EVENTS IN 2014 AND SUCCESSFULLY EXECUTED THE FIRST YEAR OF THESE PROGRAMS. THE MARKETING TEAM LEVERAGED THE PHENOMENON OF THE ICE BUCKET CHALLENGE AND RAISED AWARENESS OF OUR NETWORK OF PALS RAISING AN ADDITIONAL $3.8M IN 2014. THE DEVELOPMENT TEAM CONTINUED GROWTH IN MANY OTHER PROGRAMS EXECUTING A VERY SUCCESSFUL YEAR OF OVERALL REVENUE GROWTH. THE IT TEAM COMPLETED SPECIFICATIONS OF A NEW WEB SITE DESIGN FOR ALS TDI. THE MARKETING TEAM LAUNCHED A NEW CAMPAIGN, ALS.NET, TO BUILD BRAND AWARENESS AND DRIVE TRAFFIC TO ALS TDI. 9970297 1 1 0 0 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 43 0 1 66 1 0 0 0 0 0 1 1 0 0 0 0 X 15 14 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 MI 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 DR 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 CHAIRM 40.00 X X 366864 0 19902 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 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 LYNNE NIETO BOARD MEMBER 2.50 X 0 0 0 STEVEN FOWLER BOARD MEMBER - RESIGNED DURING 2014 2.50 X 0 0 0 ALAN GILL VP RESEARCH AND DEVELOPMEN 40.00 X 184878 0 19750 JOHN LINCECUM DIRECTOR OF DISCOVERY BIOL 40.00 X 159381 0 18119 FERNANDO VIEIRA DIR. OF RESEARCH 40.00 X 153076 0 19800 MATVEY LUKASHEV DIRECTOR, TRANSLATIONAL RESEARCH 40.00 X 162280 0 7974 ROBERT GOLDSTEIN VP OF MARKETING, COMMUNICATIONS & DEVELOPMENT 40.00 X 136675 0 7428 1163154 0 92973 11 0 1 0 PARTNERS HEALTH CARE (MGH RESEARCH) 125 HIGH STREET BOSTON MA 02241 CONTRACT RESEARCH - SCIENCE 527795 INSOURCE SERVICES INC PO BOX 427 NEWTON UPPER FALLS MA 02464 BOOKKEEPING & FINANCE & HR & IT 519005 ROPES & GRAY LLP 800 BOYLSTON STREET BOSTON MA 02199 LEGAL SERVICES 109272 3 8782063 4623369 69435 13405432 PHARMACEUTICAL CONTRACTS 541700 435914 435914 435914 5151 5151 1281688 8782063 808400 473288 473288 14319785 435914 0 478439 386765 332618 11603 42544 4004755 3505171 104640 394944 35289 30701 1059 3529 497529 430012 18578 48939 328402 287469 7610 33323 127543 125449 2094 30419 30419 460585 346705 71002 42878 21335 14778 6557 131013 102003 1071 27939 333889 258719 24726 50444 1964812 1862335 96273 6204 11086 10166 398 522 318308 226366 33972 57970 19276 19276 272258 238026 7198 27034 TESTING AND LAB EXPENSE 2210037 2210037 MISCELLANEOUS 240070 10854 41846 187370 BAD DEBT 50000 50000 PROGRAM SUPPLIES AND MA 33286 23595 2673 7018 12753 11466 1137 150 11489410 9970297 579654 939459 2237218 1924247 1473850 6675137 1592064 1173637 629769 234014 92182 279514 3085187 2208627 591307 876560 129979 185961 6746369 11349070 611613 801261 64825 109206 1245745 193078 485630 869516 2641842 X 4294268 7533591 1582585 1173637 5876853 8707228 6746369 11349070 2830375 0 X X 0 1 X 1 0 X 6927606 6444164 8936764 8115487 13405432 43829453 6927606 6444164 8936764 8115487 13405432 43829453 16677478 27151975 30729 15882 70907 5924 5151 128593 704819 782346 205876 270463 473288 2436792 46394838 1862001 0.58520 0.40620 X PART II - B, LINE 10 OTHER INCOME REPRESENTS NET SPECIAL EVENT REVENUE, EXCLUDING CONTRIBUTIONS. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 536554 635311 626644 1798509 2697764 37902 34728 24950 97580 134139 158828 156661 449628 674442 0 1 375683 209225 166458 2709504 1999402 710102 876560 X 14332536 12751 12751 14319785 0 14319785 11502161 12751 12751 11489410 0 11489410 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, 2014. 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. PART IV, LINE 2A: ALS-TDI HAS AN ARRANGEMENT TO SERVE AS A FISCAL AGENT. ALS-TDI COLLECTS CONTRIBUTIONS, IN CONNECTION WITH A SPECIAL EVENT, ON BEHALF OF OTHER PUBLIC CHARITIES AS DIRECTED BY THE DONORS. THESE AMOUNTS ARE REMITTED TO THESE PUBLIC CHARITIES SHORTLY AFTER THE SPECIAL EVENT TAKES PLACE. TRI STATE TREK 799393 763893 35500 2587 27804 63454 WHITE COAT AFFAIR - BOSTON GALA 385772 267872 117900 87720 9088 4107 33212 50 8878586 7750298 1128288 580428 10063751 8782063 1281688 90307 36892 4107 677094 808400 473288 X 1 1 X X X X 0 0 0 0 0 0 0 0 0 STEVEN PERRIN PHD CEO/CSO/PRES., VICE CHAIRM 366864 0 0 0 0 0 0 0 19902 0 386766 0 0 0 ALAN GILL VP RESEARCH AND DEVELOPMEN 184878 0 0 0 0 0 0 0 19750 0 204628 0 0 0 JOHN LINCECUM DIRECTOR OF DISCOVERY BIOL 159381 0 0 0 0 0 0 0 18119 0 177500 0 0 0 FERNANDO VIEIRA DIR. OF RESEARCH 153076 0 0 0 0 0 0 0 19800 0 172876 0 0 0 MATVEY LUKASHEV DIRECTOR, TRANSLATIONAL RESEARCH 162280 0 0 0 0 0 0 0 7974 0 170254 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 HOURS. X 12 2326 SELLING PRICE X FUNDRAISING SUPPLIES 30 37578 SELLING PRICE X AUCTION ITEMS 24 29531 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. ADDITIONALLY, LYNNE NIETO, BOARD MEMBER, IS THE WIFE OF AUGIE NIETO, CHAIRMAN AND BOARD MEMBER 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 2014, 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, IDENTIFICATION 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, IDENTIFICATION 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, IDENTIFICATION 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.