2025-05-08T14:16:52-05:00 2024-12-31 431985162 SMITH SULLIVAN & BROWN PC 80 FLANDERS ROAD SUITE 302 WESTBOROUGH MA 01581 990 2024-01-01 043563445 JETT FOUNDATION INC JETT 7815855566 390 CIRCUIT STREET NORWELL MA 02061 ERIC SNYDER PRESIDENT & CEO 7815855566 2025-05-08 1 1 SANDRA M BROWN CPA P01614103 5088717178 2025-05-08 2024 2025-03-06 01:10:19Z X ERIC SNYDER 390 CIRCUIT STREET NORWELL MA 02061 6158296 0 X HTTP://JETTFOUNDATION.ORG X 2001 MA PROVIDES DIRECT SERVICE AND SUPPORT FOR FAMILIES AFFECTED BY DUCHENNE MUSCULAR DYSTROPHY. 10 10 13 52 0 0 3413272 4815724 0 0 128422 292426 -4681 11533 3537013 5119683 815797 1407999 0 0 1067507 1159154 16200 16200 508772 782306 788765 2681810 3372118 855203 1747565 4677789 6489532 243336 256655 4434453 6232877 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 2068244 1322999 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. IN 2020, JETT ADDED TWO NEW RETREAT CAMPS IN ARIZONA AND OHIO FOR INDIVIDUALS 18 YEARS AND OLDER; THESE RETREAT CAMPS CONTINUE TO GROW IN POPULARITY. IN 2024, JETT FOUNDATION ADDED TWO ADDITIONAL CAMPS IN SOUTHERN CALIFORNIA AND SOUTH CAROLINA. CAMP PROMISE SERVED 148 CAMPERS IN PERSON AT SEVEN LOCATIONS AND ONE WEEK OF VIRTUAL CAMP SERVING 113 CAMPERS. IN TOTAL WE SERVED 261 CAMPERS WITH THE SUPPORT OF 200 VOLUNTEERS. MORE THAN 62% OF CAMPERS WERE OVER THE AGE OF 18 (AND HAVE AGED OUT OTHER CAMP OPTIONS). JETT CONTINUES TO HOST MONTHLY EVENTS INCLUDING TRIVIA NIGHTS, GAME SHOWS AND MORE.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. THROUGH THE GENEROSITY OF INDIVIDUALS, CORPORATE AND FOUNDATION SUPPORTERS, JETT ACCEPTED 14 FAMILIES INTO THE ACCESSIBLE VEHICLE PROGRAM IN 2024. 180039 COMMUNITY AND EDUCATION:FAMILY WORKSHOPS/COMMUNITY WEBINAR SERIES - 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 2024, JETT FOUNDATION WAS ABLE TO CONTINUE IN PERSON EVENTS AS WELL AS HOSTING VIRTUAL OUR COMMUNITY WEBINAR SERIES. JETT HOSTED 22 WEBINARS FEATURING CLINICAL TRIALS, DUCHENNE CARE AND WELLNESS WITH OVER 400 REGISTERED PARTICIPANTS.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. IN 2024, 31 JETT FOUNDATION AMBASSADORS FROM 23 STATES ENGAGED WITH FAMILIES AFFECTED BY DUCHENNE THROUGHOUT THE COUNTRY.FAMILY SUPPORT/PORCH NITE - LAUNCHED IN 2018 BY TWO JETT AMBASSADORS AND MOMS OF CHILDREN WITH DUCHENNE. THIS NATIONAL CAREGIVER SUPPORT PROGRAM FOCUSES ON BUILDING STRONGER SUPPORT SYSTEMS FOR FAMILIES AFFECTED BY DUCHENNE IN THEIR LOCAL COMMUNITY THROUGH STORY-TELLING, EDUCATION, AND GRIEF-MANAGEMENT. IN 2024, WE HOSTED 10 VIRTUAL PORCH NITES WITH 273 PARTICIPANTS. ADDITIONALLY, JETT FOUNDATION HOSTED THREE IN PERSON PORCH NITES SERVING 29 PARTICIPANTS. EDUCATIONAL CARE PACKAGES/NEWLY DIAGNOSED FAMILY EDUCATION MATERIALS/SERIES - A DUCHENNE DIAGNOSIS IS INCREDIBLY OVERWHELMING FOR A FAMILY. JETT FOUNDATION EDUCATIONAL CARE PACKAGES PROVIDE CRUCIAL EDUCATIONAL MATERIALS TO NEWLY DIAGNOSED FAMILIES, CAREGIVERS, TEACHERS AND CLINICIANS THAT ARE SEEKING MORE GUIDANCE ON DUCHENNE. JETT FOUNDATION PROVIDED OVER 250 CARE PACKAGES IN 2024 TO THOSE WHO REQUESTED THEM FROM THE ORGANIZATION'S WEBSITE OR ATTENDED JETT EVENTS OR PROGRAMS. THESE FREE EDUCATIONAL RESOURCES INCLUDE SUPPORT LETTERS FROM THE COMMUNITY, JETT FOUNDATION BROCHURE AND WELCOME LETTER, HEALTH INSURANCE FLIGHT PLAN, CLINICAL TRIAL FLIGHT PLAN, GENE THERAPY FAQ, TRANSITION OF CARE CHECKLIST, CLINICAL TRIAL CHEAT SHEET, DAN AND DMD CHILDREN'S BOOK, STANDARDS OF CARE AND DURABLE MEDICAL EQUIPMENT BOOKLET. 250448 85000 ADVOCACY AND RESEARCH: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. ALTHOUGH MINIMAL IN 2023 AND 2024, 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. 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. 2498731 1 1 0 1 0 0 0 0 0 1 1 0 0 1 1 0 1 0 0 0 0 0 0 1 1 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 10 0 13 1 0 0 0 0 0 0 0 0 0 0 0 0 X 10 10 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 X ALLISON CAPUTO 7815855566 390 CIRCUIT STREET NORWELL MA 02061 ERIC SNYDER EXECUTIVE DIRECTOR 40.00 X 208343 0 26619 MAURA CARROLL DIRECTOR OF DEVEPOLMENT 40.00 X 115189 0 5145 ALLISON CAPUTO DIRECTOR OF FINANCE 40.00 X 100256 0 10846 CHRISTINE MCSHERRY FOUNDER AND DIRECTOR 1.00 X X 0 0 0 ALFRED JACKSON CHAIR 1.00 X X 0 0 0 ELLEN HANSON VICE CHAIR 1.25 X X 0 0 0 MIKE MULLIN TREASURER 1.00 X X 0 0 0 COLLEEN PIKE DIRECTOR 1.00 X 0 0 0 MELISSA PAIGE DIRECTOR 0.50 X 0 0 0 DIANA JOHNSON DIRECTOR 0.50 X 0 0 0 ADRIAN KIELHORN DIRECTOR 0.50 X 0 0 0 CHRIS SCHLECHTY DIRECTOR 0.50 X 0 0 0 LEO ROBINSON DIRECTOR 0.50 X 0 0 0 423788 0 42610 3 0 1 0 0 78196 4737528 4815724 174530 174530 1094188 976292 117896 117896 117896 73854 78196 62321 11533 11533 5119683 0 0 303959 85000 85000 1322999 1322999 264973 90091 87441 87441 706779 360129 116402 230248 15209 8088 2175 4946 87479 43220 15727 28532 84714 39543 17483 27688 6979 6979 27102 27102 16200 16200 18801 2510 16291 167081 71889 56708 38484 77939 36381 16085 25473 82303 71511 1165 9627 12975 6056 2678 4241 19782 9234 4083 6465 PROGRAM/EVENT SUPPLIES 368992 354590 2758 11644 MISCELLANEOUS 6811 5319 1492 3372118 2498731 364615 508772 2080142 395970 515727 1214943 39960 520500 24026 31586 101445 82181 3429 19264 1837047 2103091 32160 23040 145298 2181138 4677789 6489532 106998 135927 50000 136338 70728 243336 256655 X 1855003 4160100 2579450 2072777 4434453 6232877 4677789 6489532 1747565 50859 0 X 0 1 X 1 0 X 2155848 2612059 3521678 3413272 4815724 16518581 2155848 2612059 3521678 3413272 4815724 16518581 4727080 11791501 514 1000 6559 116046 174530 298649 76 11533 11609 16828839 87489 0.70070 0.68060 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 3372118 3372118 318606 79652 0 0 255736 251958 284091 318606 1110391 1665587 63934 62990 71023 79652 277599 416399 1110767 50000 131510 1292277 982836 127931 1110767 1000000 -17164 982836 0.00000 1.00000 0.00000 0 0 34743 34743 0 66702 47438 19264 19264 SECURITY DEPOSITS 10560 OPERATING RIGHT-OF-USE ASSET 74239 PROPERTY ACQUISITION AND PRE-DEVELOPMENT COSTS 2096339 2181138 OPERATING LEASE LIABILITIES 70728 70728 5170542 50859 50859 5119683 0 5119683 3372118 0 3372118 0 3372118 X 1 BOBBI DAVIS 2912 TAMBAY AVE TAMPA FL 33611 GRANT WRITER 0 0 16200 0 16200 TEAM JETT 11849 11849 1419 JETT GOLF CLASSIC 140201 66347 73854 2969 32610 16559 8764 152050 78196 73854 2969 32610 16559 10183 62321 11533 1 UMASS CHAN MEDICAL SCHOOL 333 SOUTH STREET SHREWSBURY MA 01545 043108190 501C3 10000 0 RESEARCH UNIVERSITY OF FLORIDA FOUNDATION PO BOX 14425 GAINSEVILLE FL 32604 590974739 501C3 75000 0 RESEARCH 2 0 DIRECT ASSISTANCE - JETT GIVING FUND 18 1197413 ACTUAL COST ACCESSIBLE VEHICLES DIRECT ASSISTANCE - JETT GIVING FUND 22 27485 ACTUAL COST EQUIPMENT ASSISTANCE DIRECT ASSISTANCE - JETT GIVING FUND 70 98101 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 198343 0 10000 0 0 0 7800 0 18819 0 234962 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 ANOTHER'S WEBSITE/UPON REQUEST