2024-09-10T11:47:18-05:00 2023-12-31 431985162 SMITH SULLIVAN & BROWN PC 80 FLANDERS ROAD SUITE 302 WESTBOROUGH MA 01581 990 2023-01-01 043563445 JETT FOUNDATION INC JETT 7815855566 36 CORDAGE PARK CIRCLE SUITE 328 PLYMOUTH MA 02360 ERIC SNYDER EXECUTIVE DIRECTOR 7815855566 2024-09-10 1 0 SANDRA M BROWN CPA P01614103 5088717178 2024-09-10 2023 2024-08-08 14:25:15Z ERIC SNYDER 36 CORDAGE PARK CIRCLE SUITE 328 PLYMOUTH MA 02360 3697514 0 X HTTP://JETTFOUNDATION.ORG X 2001 MA JETT FOUNDATION PROVIDES DIRECT SERVICE AND SUPPORT FOR FAMILIES AFFECTED BY DUCHENNE MUSCULAR DYSTROPHY. 11 11 13 111 0 0 3521678 3413272 0 0 6559 128422 76 -4681 3528313 3537013 497725 815797 0 0 886163 1067507 0 16200 510950 655279 782306 2039167 2681810 1489146 855203 3509096 4677789 46555 243336 3462541 4434453 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 1495496 815797 DIRECT SERVICE:CAMP PROMISE--JETT FOUNDATION'S SUMMER CAMP, 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. CAMP PROMISE PROVIDES CAMPER-FOCUSED PROGRAMMING THAT BUILDS INDEPENDENCE, CONFIDENCE AND LIFE SKILLS THROUGH TRADITIONAL CAMP ACTIVITIES AND BY BRINGING CAMPERS NEW EXPERIENCES THROUGH ADAPTATION, TECHNOLOGY, CREATIVITY, AND SPECIAL GUESTS.JETT GIVING FUND--JETT FOUNDATION ESTABLISHED THE JETT GIVING FUND TO ASSIST FAMILIES AFFECTED BY DUCHENNE MUSCULAR DYSTROPHY IN PURCHASING UNAFFORDABLE, BUT VITAL MEDICAL AND ACCESSIBILITY EQUIPMENT. HEALTH INSURANCE OFTEN WON'T COVER ALL SPECIALIZED MEDICAL AND ACCESSIBILITY EQUIPMENT SUCH AS SCOOTERS, SHOWER CHAIRS, RAMPS, ROTATIONAL BEDS AND ACCESSIBLE VANS; ITEMS NEEDED WHEN SUFFERING FROM A PROGRESSIVE MUSCLE-WASTING DISORDER. WITHOUT THESE NECESSITIES, THOSE WITH DUCHENNE STRUGGLE TO PARTICIPATE IN THE KINDS OF ACTIVITIES THAT MOST PEOPLE TAKE FOR GRANTED, SUCH AS GETTING TO AND FROM SCHOOL, OR GOING TO THE MALL WITH FRIENDS. 170741 READY. SET. JETT. EDUCATIONAL PROGRAMMING:FAMILY WORKSHOPS--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.JETTRIDE--JETTRIDE IS A 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.THE COMMUNITY AMBASSADOR PROGRAM--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. NEWLY DIAGNOSED FAMILY EDUCATION MATERIALS/SERIES --A DUCHENNE DIAGNOSIS IS INCREDIBLY OVERWHELMING FOR A FAMILY. JETT FOUNDATION HAS RECEIVED FEEDBACK FROM MEMBERS OF OUR COMMUNITY THAT THERE IS A NEED FOR ADDITIONAL RESOURCES THAT EDUCATE ON EVERYTHING FROM COMMUNICATING THE DIAGNOSIS AND DISEASE TO FAMILY MEMBERS AND FRIENDS, TO NAVIGATING HEALTH INSURANCE, TO UNDERSTANDING CLINICAL TRIAL AND TREATMENT OPTIONS. IN RESPONSE TO THIS UNMET NEED, IN 2019 WE DEVELOPED FREE, EDUCATIONAL RESOURCES IN PARTNERSHIP WITH SCIENTIFIC AND CLINICAL EXPERTS. THESE FREE EDUCATIONAL RESOURCES ARE PRODUCED AT JETT FOUNDATION AND ARE AVAILABLE FOR FREE TO ALL FAMILIES, CLINICIANS, AND TEACHERS. SOME OF THESE MATERIALS INCLUDE; HEALTH INSURANCE FLIGHT PLAN, CLINICAL TRIAL FLIGHT PLAN, GENE THERAPY FAQ, CLINICAL TRIAL CHEAT SHEET, DAN AND DMD CHILDREN'S BOOK NAMED THE COMMUNITY CARE INITIATIVE, THIS INITIATIVE LAUNCHED IN LATE 2017 TO PROVIDE EDUCATIONAL RESOURCES TO PEOPLE AND FAMILIES AFFECTED BY DUCHENNE MUSCULAR DYSTROPHY. THE DUCHENNE BIOTECHNOLOGY COUNCIL ("DBC")--THE 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. 120559 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. 76819 RESEARCH--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. 76819 1863615 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 0 1 0 0 0 0 0 0 1 1 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 8 0 13 1 0 0 0 0 0 0 0 0 0 0 0 0 X 11 11 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 CHAIR/FORMER VICE CHAIR 1.00 X X 0 0 0 COLLEEN PIKE DIRECTOR 1.00 X 0 0 0 ELLEN HANSON DIRECTOR/FORMER 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 DIANA JOHNSON DIRECTOR 0.50 X 0 0 0 CHRIS SCHLECHTY DIRECTOR 0.50 X 0 0 0 ADRIAN KIELHORN DIRECTOR 0.50 X 0 0 0 MELISSA PAIGE DIRECTOR 0.50 X 0 0 0 ERIC SNYDER EXECUTIVE DIRECTOR 40.00 X 193757 0 17931 MAURA CARROLL DIRECTOR OF DEVEPOLMENT 40.00 X 114031 0 665 307788 0 18596 2 0 1 0 0 88373 3324899 3413272 115946 115946 98086 85610 12476 12476 12476 70210 88373 74891 -4681 -4681 3537013 0 0 123741 815797 815797 211689 105845 42338 63506 720582 357413 125085 238084 60625 30066 10490 20069 74611 37070 13370 24171 5470 5470 27148 27148 16200 16200 40700 2700 38000 154580 62430 53922 38228 71019 35286 12726 23007 93205 75744 600 16861 12456 6189 2232 4035 14665 7286 2628 4751 PROGRAM/EVENT SUPPLIES 350354 329080 6160 15114 MISCELLANEOUS 12709 1409 2376 8924 2681810 1863615 307245 510950 1145509 2080142 766209 515727 12500 39960 28525 24026 81754 78325 4456 3429 1496881 1837047 38880 32160 16136 145298 3509096 4677789 46555 106998 0 136338 46555 243336 X 1663514 1855003 1799027 2579450 3462541 4434453 3509096 4677789 855203 116709 0 X 0 1 X 1 0 X 1576752 2155848 2612059 3521678 3413272 13279609 1576752 2155848 2612059 3521678 3413272 13279609 4156613 9122996 514 1000 6559 116046 124119 76 76 13403804 214059 0.68060 0.63670 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 2681810 2681810 284091 71023 0 0 243434 255736 251958 284091 1035219 1552829 60859 63934 62990 71023 258806 388209 982836 127931 1110767 1000000 -17164 982836 0.00000 1.00000 0.00000 0 0 34743 34743 0 47011 43582 3429 3429 OPERATING LEASE LIABILITIES 136338 136338 3653722 116709 116709 3537013 0 3537013 2681810 0 2681810 0 2681810 X 1 BOBBI DAVIS 2912 TAMBAY AVE TAMPA FL 33611 GRANT WRITER 0 0 16200 0 16200 TRI FOR JETT 8380 8380 509 JETT GOLF CLASSIC 132742 62532 70210 31940 15786 23016 1 17461 17461 3639 158583 88373 70210 31940 15786 27164 74890 -4680 1 DIRECT ASSISTANCE - JETT GIVING FUND 36 87139 ACTUAL COST EMERGENCY FUND DIRECT ASSISTANCE - JETT GIVING FUND 11 728658 ACTUAL COST ACCESSIBILITY EQUIPMENT 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 193757 0 0 0 0 0 0 0 17931 0 211688 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