2017-05-09T13:41:44-05:00 2016-12-31 431985162 SMITH SULLIVAN & BROWN PC 80 FLANDERS ROAD - SUITE 200 WESTBOROUGH MA 01581 990 2016-01-01 043563445 JETT FOUNDATION INC JETT 7815855566 68 EVERGREEN STREET SUITE ONE KINGSTON MA 02364 CHRISTINE MCSHERRY EXECUTIVE DIRECTOR & PRESIDENT 7815855566 2017-05-05 1 MAUREEN L SULLIVAN CPA P00296843 5088717178 2017-05-05 71.248.188.134 2017-05-05 10:10:06 ED P 0D4C8ECD24EC751BACF6694ED05C566ACFA0BC2A 0D4C8ECD24EC751BACF6694ED05C566ACFA0BC2A 2016 2021-01-29 14:40:06Z CHRISTINE MCSHERRY 68 EVERGREEN STREET SUITE ONE KINGSTON MA 02364 2293526 0 X HTTP://JETTFOUNDATION.ORG X 2001 MA RESEARCH FOR DUCHENNE MUSCULAR DYSTROPHY 5 5 12 111 0 0 1101741 2195382 0 0 0 0 10489 32607 1112230 2227989 24058 1654 0 0 400330 512646 0 0 95830 478648 1460713 903036 1975013 209194 252976 564746 897886 31124 111288 533622 786598 X THE MISSION OF THE JETT FOUNDATION IS TO INCREASE WORLDWIDE AWARENESS OF DUCHENNE MUSCULAR DYSTROPHY WITH THE PURPOSE OR RAISING AND APPROPRIATING FUNDS FOR PROGRAMS, EDUCATION, RESEARCH AND ADVOCACY THAT WILL FIND TREATMENTS, REALIZE A CURE FOR THIS FATAL DISEASE AND ENSURE THAT ALL AFFECTED BY DUCHENNE HAVE THE OPPORTUNITY TO ENJOY A FULL LIFE. 0 0 417530 1654 DIRECT SERVICE:CAMP PROMISE:JETT FOUNDATION'S SUMMER CAMP, CALLED CAMP PROMISE, HAS BEEN THE ONLY CAMP IN THE COUNTRY FOR KIDS, TEENS, AND ADULTS WITH MUSCULAR DYSTROPHY AND NEUROMUSCULAR DISEASES SINCE 2009. WITH NO UPPER AGE LIMIT AND A COMPLETE ON-SITE, 24-HOUR MEDICAL TEAM, JETT PROVIDES A FREE AND UNIQUE OPPORTUNITY FOR CAMPERS TO EXPERIENCE A WEEK OF INDEPENDENCE, FREEDOM AND NEW OPPORTUNITIES AWAY FROM THE ROUTINE OF DAILY LIFE.AT CAMP PROMISE, CAMPER-FOCUSED PROGRAMMING IS PROVIDED THAT BUILDS INDEPENDENCE, CONFIDENCE AND LIFE SKILLS THROUGH TRADITIONAL CAMP ACTIVITIES AND BY BRINGING CAMPERS NEW EXPERIENCES THROUGH ADAPTATION, TECHNOLOGY, CREATIVITY, AND SPECIAL GUESTSIN 2016, JETT SERVED MORE THAN 70 CAMPERS AND WORKED WITH 85 VOLUNTEERS ACROSS 3 WEEKS IN 3 DIFFERENT GEOGRAPHICAL LOCATIONS, EAST, WEST AND THE ROCKIES. IN 2015, JETT SERVED MORE THAN 65 CAMPERS AND WORKED WITH 85 VOLUNTEERS. IT IS NUMBERS LIKE THESE, IN ADDITION TO THE INTANGIBLE MEMORIES OF CAMP, THROUGH WHICH WE MEASURE AND BELIEVE IN THE MAGNITUDE OF THE IMPACT OF CAMP PROMISE.ROUNDTABLES:THE JETT FOUNDATION HAS PARTNERED WITH OTHER DUCHENNE ORGANIZATIONS, INSTITUTIONS, PHARMACEUTICAL COMPANIES, CLINICIANS AND OTHER EXPERTS AROUND THE COUNTRY IN A SERIES OF REGIONAL ROUNDTABLE CLINICAL TRIAL DISCUSSIONS. THESE EVENTS HELP INFORM AND CREATE A DISCUSSION AROUND CLINICAL TRIALS OPTIONS BOTH LOCALLY AND WORLDWIDE. WITH THE DEVELOPMENT OF NEARLY 60 ONGOING DRUG TRIALS IN THE DUCHENNE SPACE, JETT FOUNDATION HAS BECOME A LEADER IN EDUCATING FAMILIES AND THE BROADER COMMUNITY ABOUT CLINICAL TRIALS.JETTRIDE:JETTRIDE IS A DIRECT SERVICE PROGRAM FOR SIBLINGS AND CLOSE FRIENDS OF THOSE AFFLICTED WITH DUCHENNE. THE JETTRIDE GIVES THESE INDIVIDUALS THE OPPORTUNITY TO CONNECT WITH OTHER TEENS WHO ARE LIVING THROUGH THE SAME EXPERIENCES IN ORDER TO BUILD LIFELONG FRIENDSHIP. 1132214 0 EDUCATION:THE JETT FOUNDATION HAS SPONSORED EDUCATIONAL FORUMS ACROSS THE COUNTRY FOR PARENTS, CAREGIVERS, FRIENDS, FAMILY AND RESEARCHERS SINCE 2007. IT IS THE ONLY PROGRAM LIKE IT IN THE COUNTRY AND FILLS A MUCH NEEDED GAP IN SERVICES FOR FAMILIES AND INDIVIDUALS AFFECTED BY DUCHENNE MUSCULAR DYSTROPHY. THE JETT FOUNDATION ALSO PARTICIPATES IN BOTH NATIONAL AND INTERNATIONAL CONFERENCES TO SHARE OUR SUCCESSES AND TO CONTINUALLY EDUCATE OURSELVES SO THAT WE CAN CONTINUE TO ASSIST CHILDREN AND FAMILIES AS THEY NAVIGATE THE PERSONAL, MEDICAL AND COMMUNITY CHALLENGES OF LIVING WITH DUCHENNE.JETT FOUNDATION FOCUSES ON WORKING WITH INDUSTRY, REGULATORY AGENCIES AND THE PATIENT COMMUNITY IN ORDER TO GAIN ACCESS TO SAFE AND EFFECTIVE THERAPEUTICS AS QUICKLY AS POSSIBLE. THE JETT FOUNDATION IS IMPROVING THE WAY PATIENTS AND THEIR COMMUNITIES ARE EDUCATED ABOUT DUCHENNE AND THE REGULATORY SYSTEM. THE ORGANIZATION HAS ESTABLISHED CREDIBILITY, ACCESS AND ACTION BASED IMPACT WITH THE COMMUNITY, CONGRESS AND AGENCY REPRESENTATIVE; SOMETHING FEW ORGANIZATIONS HAVE BEEN ABLE TO ACHIEVE IN DUCHENNE OR ANY OTHER RARE OR LIFE THREATENING DISEASE.THIS HAS REQUIRED A LARGE-SCALE COORDINATION EFFORT OF EXPERTS, CONFERENCES, CONGRESSIONAL MEETINGS AND OVERSIGHT HEARING. JETT HAS BROUGHT EXPERTS IN THE RESEARCH AND MEDICAL FIELDS, TOGETHER WITH PATIENT ADVOCATES TO EDUCATE THE FDA ON THE URGENT NEED FOR ACCELERATED APPROVAL. THE ORGANIZATION MADE TRAVEL SCHOLARSHIPS AVAILABLE TO THOSE PATIENTS WHO WOULD OTHERWISE NOT BE ABLE TO ATTEND THESE MEETINGS, AND FINAL ATTENDANCE APPROACHED NEARLY 1,000 AT A SINGLE ADVISORY COMMITTEE MEETING IN 2016, THE LARGEST IN FDA HISTORY. 184352 0 ADVOCACY:THE JETT FOUNDATION'S CONTINUED WORK IN ADVOCACY HAS BEEN FOCUSED ON EDUCATING REGULATORY AND INDUSTRY PARTNERS ABOUT DUCHENNE IN HOPES TO ACCELERATE THE PATHWAYS TO FINDING TREATMENTS FOR THIS FATAL DISEASE. 17415 0 RESEARCH:ALTHOUGH MINIMAL IN 2016, THE JETT FOUNDATION CONTINUES TO SUPPORT RESEARCH. JETT'S EFFORTS IN RESEARCH HAVE LED TO AN INCREASE IN CLINICAL TRIALS, WHICH HAS EXPANDED THE ORGANIZATION'S EDUCATIONAL PROGRAMMING. 17415 0 1751511 1 1 0 1 0 0 0 0 0 0 1 0 0 1 0 0 1 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 1 15 0 12 1 0 0 0 0 0 1 1 0 0 0 0 X 5 5 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 MA X CHRISTINE MCSHERRY 7815855566 68 EVERGREEN STREET SUITE ONE KINGSTON MA 02364 RHONDA KALLMAN CHAIRMAN OF THE BOARD 2.00 X X 0 0 0 EVY NELSON VICE CHAIR 1.00 X X 0 0 0 LEO ROBINSON TREASURER 2.00 X X 0 0 0 KRISTEN DALY DIRECTOR 1.00 X 0 0 0 ROBERT HIGGINS DIRECTOR 1.00 X 0 0 0 CHRISTINE MCSHERRY PRESIDENT & EXECUTIVE DIRECTOR 60.00 X 108900 0 0 108900 0 0 1 0 0 0 0 194372 2001010 2195382 98144 194372 65537 32607 32607 2227989 0 0 32607 1654 1654 108000 97200 5400 5400 365581 276247 28963 60371 39065 30805 2835 5425 9587 9587 15000 15000 132809 129411 3398 128654 68848 39833 19973 30497 22757 4694 3046 722902 711980 10500 422 135199 135199 6828 5095 1051 682 5334 5334 CAMP PROMISE 122918 122918 PROGRAM/EVENT SUPPLIES 108732 107979 242 511 ROUNDTABLES 41418 41418 MISCELLANEOUS 835 835 1975013 1751511 127672 95830 428946 700631 7500 1924 25105 68785 33135 4876 35650 129000 129000 564746 897886 31124 82878 1960 26450 31124 111288 X 533622 778198 8400 533622 786598 564746 897886 252976 0 X 0 1 X 1 0 X 432876 1092352 833429 1101741 2195382 5655780 432876 1092352 833429 1101741 2195382 5655780 2505036 3150744 13 13 5655793 505347 0.55710 0.70750 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 1975013 1975013 248751 62188 0 0 164936 160455 248751 574142 861213 41234 40114 62188 143536 215304 34743 25271 9472 34042 7864 26178 35650 SECURITY DEPOSITS 4000 INVESTMENT IN LLC 125000 129000 2606111 378122 378122 2227989 0 2227989 2353135 378122 378122 1975013 0 1975013 X ANNUAL GOLF TOURNAMENT 116526 53015 63511 1207 30160 13132 5602 GALS FOR CAL 95985 95985 96 2985 3 80005 45372 34633 1650 1895 6600 2210 292516 194372 98144 1303 31810 15027 6600 10797 65537 32607 CHRISTINE MCSHERRY EXECUTIVE DIRECTOR OF ORGANIZATION ADVANCE X 7500 7500 0 1 0 7500 JORDAN MCSHERRY CHILD OF EXECUTIVE DIRECTOR 43200 COMPENSATION PAID TO CHILD OF EXECUTIVE DIRECTOR AS HEALTH POLICY ADVOCATE 0 FORM 990, PART VI, SECTION B, LINE 11B THE GOVERNING BODY REVIEWS THE FORM 990 FOR ACCURACY AND COMPLETENESS BEFORE BEING FILED WITH THE INTERNAL REVENUE SERVICE. FORM 990, PART VI, SECTION B, LINE 12C THE ORGANIZATION'S GOVERNING BODY REQUIRES AN ANNUAL DECLARATION FROM ALL BOARD MEMBERS AND SENIOR MANAGEMENT AS TO THE EXISTENCE AND DISCLOSURE OF ANY POTENTIAL CONFLICTS OF INTEREST. THE BOARD MEMBERS SIGN A DISCLOSURE STATEMENT. ANY POTENTIAL CONFLICTS ARE DISCUSSED BY THE DIS-INTERESTED BOARD MEMBERS, WHILE THE PARTY IN POTENTIAL CONFLICT IS REQUIRED TO LEAVE THE ROOM. BOARD MEETING MINUTES WILL DOCUMENT THE DISCUSSION AND DECISION MAKING PROCESS. IN THE EVENT OF A POTENTIAL CONFLICT, PROCEDURES TO OBTAIN COMPETITIVE BIDS AND DILIGENCE ON FAIR MARKET VALUE WILL BE ESTABLISHED. FORM 990, PART VI, SECTION B, LINE 15 THE ORGANIZATION'S GOVERNING BODY REVIEWS SALARY DATA, MARKET CONDITIONS AND OTHER APPLICABLE DATA FOR DETERMINING THE COMPENSATION OF THE CEO AND KEY EMPLOYEES WHEN NECESSARY. FORM 990, PART VI, SECTION C, LINE 19 UPON REQUEST