2023-10-23T09:02:42-05:00 2022-12-31 431985162 SMITH SULLIVAN & BROWN PC 80 FLANDERS ROAD - SUITE 302 WESTBOROUGH MA 01581 990 2022-01-01 043563445 JETT FOUNDATION INC JETT 7815855566 36 CORDAGE PARK CIRCLE SUITE 328 PLYMOUTH MA 02360 ERIC SNYDER EXECUTIVE DIRECTOR 7815855566 2023-10-23 1 ERIC SNYDER 999009999 0 SANDRA M BROWN CPA P01614103 5088717178 2023-10-10 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z ERIC SNYDER 36 CORDAGE PARK CIRCLE SUITE 328 PLYMOUTH MA 02360 3532395 0 X HTTP://JETTFOUNDATION.ORG X 2001 MA JETT FOUNDATION PROVIDES DIRECT SERVICE AND SUPPORT FOR FAMILIES AFFECTED BY DUCHENNE MUSCULAR DYSTROPHY. 9 9 13 84 0 0 2612059 3521678 0 0 1000 6559 -14420 76 2598639 3528313 803627 497725 0 0 835172 886163 0 0 321224 476925 655279 2115724 2039167 482915 1489146 2196455 3509096 206312 46555 1990143 3462541 X JETT FOUNDATION EMPOWERS PEOPLE AND FAMILIES IMPACTED BY DUCHENNE MUSCULAR DYSTROPHY THROUGH THE DEVELOPMENT OF TRANSFORMATIVE PROGRAMMING, EDUCATIONAL OPPORTUNITIES, AND ONGOING SUPPORT FOR EVERY STAGE OF A DUCHENNE JOURNEY. 0 0 1109413 497725 DIRECT SERVICE - JETT GIVING FUND AND CAMP PROMISE:JETT GIVING FUND WAS ESTABLISHED TO ASSIST FAMILIES AFFECTED BY DUCHENNE MUSCULAR DYSTROPHY IN TWO WAYS. 1. PURCHASING AFFORDABLE, BUT VITAL ACCESSIBILITY EQUIPMENT SUCH AS ACCESSIBLE VEHICLES. 2. PROVIDING FINANCIAL ASSISTANCE FOR EMERGENCY SITUATIONS SUCH AS RENT AND UTILITY SUPPORT AND FOOD INSECURITY. CAMP PROMISE IS A BARRIER FREE WEEK LONG OVERNIGHT CAMP FOR THOSE WITH DUCHENNE AND OTHER NEUROMUSCULAR DISORDERS. 150203 EDUCATIONAL PROGRAMMING:JETT FOUNDATION FAMILY WORKSHOPS ARE A NATIONAL EDUCATIONAL PROGRAM THAT BRINGS CLINICIANS, RESEARCHERS, AND FAMILIES AFFECTED BY DUCHENNE TOGETHER TO LEARN ABOUT CARE, CRUCIAL INFORMATION AND RESOURCES IN MANY CITIES EACH YEAR. THE MISSION OF THIS PROGRAM IS TO EMPOWER PATIENTS AND FAMILIES WITH THE KNOWLEDGE NEEDED TO BE THEIR OWN BEST ADVOCATES, SPREAD AWARENESS ABOUT DUCHENNE IN THE MEDICAL FIELD, AND HELP ACCELERATE RESEARCH AND DEVELOPMENT.IN 2021, JETT FOUNDATION CONTINUED TO PROVIDE OUR NEW VIRTUAL COMMUNITY WEBINAR SERIES. JETT HOSTED 19 WEBINARS FEATURING CLINICAL TRIALS, DUCHENNE CARE AND WELLNESS WITH OVER 500 REGISTERED PARTICIPANTS.LAUNCHED IN 2017, THIS PROGRAM SPREADS AWARENESS ABOUT DUCHENNE AND THE PROGRAMS AND SERVICES THAT JETT FOUNDATION PROVIDES, THROUGH COMMUNITY AMBASSADORS (MOMS, DADS, GRANDPARENTS, AND SIBLINGS) WHO ARE ALREADY FAMILIAR WITH THE DUCHENNE LANDSCAPE. IN 2021, 17 JETT FOUNDATION AMBASSADORS ENGAGED WITH AN ESTIMATED 275 FAMILIES AFFECTED BY DUCHENNE THROUGHOUT THE COUNTRY. THE DUCHENNE BIOTECHNOLOGY COUNCIL ("DBC") IS A GROUP OF INDUSTRY PARTNERS IN THE DUCHENNE SPACE WHO HAVE COME TOGETHER TO TRY TO SOLVE SOME OF THE MAJOR BARRIERS TO INNOVATION THAT THEY ALL FACE IN DUCHENNE DRUG DEVELOPMENT. AS A TEAM, THESE PHARMACEUTICAL COMPANIES, WITH DIFFERENT TECHNOLOGIES, INTELLECTUAL PROPERTIES, AND CULTURES, HAVE COMMITTED TO MEETING QUARTERLY TO BRAINSTORM AND THEN TACKLE THE COMMON CHALLENGES THEY ALL FACE AS DRUG DEVELOPERS IN DUCHENNE. DUE TO STAFFING CHANGES AND COVID-19 THE COUNCIL DID NOT MEET IN 2021. JETT USED THIS TIME TO FURTHER EVALUATE THE YOUR VOICE; BURDEN OF DISEASE STUDY AND ENGAGE A CONSULTANT TO GUIDE NEXT STEPS IN 2021. 104279 RESEARCH: ALTHOUGH MINIMAL IN 2021, 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 TO INCLUDE INFORMATION ON INNOVATIVE RESEARCH AND DRUG DEVELOPMENT. 82966 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. 82966 1446861 1 1 0 1 0 0 0 0 0 1 1 0 0 0 0 0 1 0 0 0 0 0 0 0 1 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 7 0 13 1 0 0 0 0 0 0 0 0 0 0 0 0 X 9 9 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 MA AL AR CA CT FL GA HI IL KS KY MD MI MN MS MO NH NJ NM NY NC OK OR PA RI SC TN UT VA WV WI X ALLISON CAPUTO 7815855566 36 CORDAGE PARK CIRCLE SUITE 328 PLYMOUTH MA 02360 CHRISTINE MCSHERRY FOUNDER AND DIRECTOR 1.00 X X 0 0 0 LEO ROBINSON DIRECTOR 0.50 X 0 0 0 ALFRED JACKSON VICE CHAIR/CLERK 1.00 X X 0 0 0 COLLEEN PIKE DIRECTOR 0.50 X 0 0 0 ELLEN HANSON CHAIR 1.00 X 0 0 0 MIKE MULLIN TREASURER 1.00 X X 0 0 0 ROBERT STUBBS DIRECTOR 0.50 X 0 0 0 WENDY ERLER DIRECTOR 0.50 X 0 0 0 DIANE JOHNSON DIRECTOR 0.50 X 0 0 0 ERIC SNYDER EXECUTIVE DIRECTOR 40.00 X 182627 0 17134 182627 0 17134 1 0 1 0 0 29030 3492648 3521678 6559 6559 4158 29030 4082 76 76 3528313 0 0 6635 497725 497725 195011 97506 39002 58503 597241 322067 109055 166119 34941 19046 6290 9605 58970 31269 11003 16698 11385 11385 20294 20294 3937 3937 118837 43240 43944 31653 70507 37386 13156 19965 61188 55959 1171 4058 6172 3273 1151 1748 12183 6460 2273 3450 PROGRAM/EVENT SUPPLIES 346121 332930 3957 9234 MISCELLANEOUS 4655 4464 191 2039167 1446861 271082 321224 1338204 1145509 763196 766209 12500 24983 28525 79445 74989 6308 4456 6828 1496881 40800 38880 16136 16136 2196455 3509096 202682 46555 3630 206312 46555 X 1183610 1663514 806533 1799027 1990143 3462541 2196455 3509096 1489146 -16748 0 X 0 1 X 1 0 X 1872177 1576752 2155848 2612059 3521678 11738514 1872177 1576752 2155848 2612059 3521678 11738514 4259185 7479329 514 1000 6559 8073 76 76 11746663 465214 0.63670 0.63690 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 2039167 2039167 251958 62990 0 0 233333 243434 255736 251958 984461 1476692 58333 60859 63934 62990 246116 369174 0 1000000 -17164 982836 1.00000 0 0 34743 34743 0 44702 40246 4456 4456 3511565 -16748 -16748 3528313 0 3528313 2039167 0 2039167 0 2039167 TRI FOR JETT 20790 20790 1630 20790 20790 1630 1630 -1630 1 DIRECT ASSISTANCE - JETT GIVING FUND 6 453094 ACTUAL COST ACCESSIBILITY EQUIPMENT DIRECT ASSISTANCE - JETT GIVING FUND 13 44631 ACTUAL COST EMERGENCY FUND PART I, LINE 2: THE JETT GIVING FUND WAS ESTABLISHED TO PROVIDE FAMILIES WITH FINANCIAL ASSISTANCE THROUGH TWO MAIN BRANCHES OF SUPPORT: THE ACCESSIBLE VEHICLE FUND AND THE EMERGENCY FUND. THE ACCESSIBLE VEHICLE FUND ASSISTS FAMILIES WITH OBTAINING SAFE, ACCESSIBLE TRANSPORTATION. ELIGIBLE INDIVIDUALS OR FAMILIES WILL PARTNER WITH JETT FOUNDATION TO RAISE HALF OR MORE OF THE COST OF THE VEHICLE, ONCE THE APPLICANT'S FUNDRAISING GOAL IS REACHED, JETT FOUNDATION WILL PURCHASE THE VEHICLE DIRECTLY FROM THE VENDOR. THE EMERGENCY FUND PROVIDES FINANCIAL SUPPORT TO QUALIFYING FAMILIES AND INDIVIDUALS IMPACTED BY DUCHENNE LIVING IN THE UNITED STATES. THIS FUND ALLOWS THE JETT FOUNDATION TO HELP FAMILIES QUICKLY AND HAS THE FLEXIBILITY TO ADDRESS EACH FAMILY'S INDIVIDUAL NEED. PRIMARY FOCUS AREAS OF THIS FUND ARE, FOOD INSECURITY, UTILITY SUPPORT, OR MORTGAGE AND OR RENT ASSISTANCE. X X 0 0 0 0 0 0 0 0 0 ERIC SNYDER EXECUTIVE DIRECTOR 182627 0 0 0 0 0 0 0 17134 0 199761 0 0 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