2022-11-09T16:22:52-06:00 2021-12-31 431985162 SMITH SULLIVAN & BROWN PC 80 FLANDERS ROAD - SUITE 200 WESTBOROUGH MA 01581 990 2021-01-01 043563445 JETT FOUNDATION INC JETT 7815855566 36 CORDAGE PARK CIRCLE SUITE 328 PLYMOUTH MA 02360 ERIC SNYDER EXECUTIVE DIRECTOR 7815855566 2022-11-09 1 ERIC SNYDER 999009999 SANDRA M BROWN CPA P01614103 5088717178 2022-11-09 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z ERIC SNYDER 36 CORDAGE PARK CIRCLE SUITE 328 PLYMOUTH MA 02360 2613059 0 X HTTP://JETTFOUNDATION.ORG X 2001 MA RESEARCH FOR DUCHENNE MUSCULAR DYSTROPHY 8 8 12 0 0 0 2155848 2612059 0 0 514 1000 80191 -14420 2236553 2598639 764726 803627 0 0 722263 835172 0 0 311501 381686 476925 1868675 2115724 367878 482915 1572536 2196455 66941 206312 1505595 1990143 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 1243974 803627 DIRECT SERVICE - JETT GIVING FUND AND CAMP PROMISE: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 PROVIDED FOURTEEN ACCESSIBLE VEHICLES IN 2021. 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.WHILE THE DELIVERY METHOD OF CAMP PROMISE WAS AGAIN VIRTUAL IN 2021 DUE TO COVID-19, THE HEART AND MAGIC OF THIS PROGRAM REMAINED THE SAME. JETT SERVED 165 CAMPERS FROM 32 STATES WITH FIVE WEEKS OF VIRTUAL CAMP. MORE THAN 50% OF CAMPERS WERE OVER THE AGE OF 18 (AND HAVE AGED OUT OTHER CAMP OPTIONS) AND NEARLY 33% WERE BRAND NEW TO CAMP. CAMP PROMISE HAS ALSO CONTINUED TO PROVIDE YEAR-ROUND VIRTUAL PROGRAMMING TO CAMPERS. JETT HOSTS MONTHLY EVENTS INCLUDING A CAMPER PANEL WHERE CAMPERS ARE EMPOWERED TO SPEAK ABOUT THEIR EXPERIENCES ON A VARIETY OF TOPICS SUCH AS HIRING A PCA, NAVIGATING COLLEGE, THE FEMALE PERSPECTIVE, AND MORE. 92319 READY. SET. JETT. 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. 98765 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. 80598 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. 80598 1515656 1 1 0 1 0 0 0 0 0 0 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 9 0 12 1 0 0 0 0 0 0 0 0 0 0 0 0 X 8 8 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 KELLY MACGRATH 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 0.50 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 AHMAD SAADAT FORMER TREASURER 0.50 X X 0 0 0 ERIC SNYDER EXECUTIVE DIRECTOR 40.00 X 171957 0 14253 171957 0 14253 1 0 1 0 0 60870 121657 2429532 2612059 1000 1000 0 60870 14420 -14420 -14420 2598639 0 0 -13420 803627 803627 186209 63311 61449 61449 563580 316202 88866 158512 26817 16074 3427 7316 58566 29833 11594 17139 9093 9093 29159 29159 24809 24809 141072 62120 41848 37104 68025 34650 13467 19908 21627 21120 507 15212 15212 2006 1022 397 587 9534 4856 1888 2790 PROGRAM/EVENT SUPPLIES 154936 147629 1319 5988 MISCELLANEOUS 1452 1251 201 2115724 1515656 288567 311501 698266 1338204 800100 763196 44188 24983 79445 73137 8314 6308 5532 6828 40800 16136 16136 1572536 2196455 66941 202682 3630 66941 206312 X 789484 1183610 716111 806533 1505595 1990143 1572536 2196455 482915 1632 0 X 0 1 X 1 0 X 1566314 1872177 1576752 2155848 2612059 9783150 1566314 1872177 1576752 2155848 2612059 9783150 3551145 6232005 514 1000 1514 9784664 647504 0.63690 0.53960 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2114727 2114727 255736 63934 0 0 239760 233333 243434 255736 972263 1458395 59940 58333 60859 63934 243066 364599 34743 34743 0 44702 38394 6308 6308 2599275 1632 1632 2597643 997 997 2598640 2114727 0 2114727 997 997 2115724 PART XI, LINE 4B - OTHER ADJUSTMENTS: EVENT COSTS 997. PART XII, LINE 4B - OTHER ADJUSTMENTS: EVENT COSTS 997. VIRTUAL CHALLENGE 60870 60870 14420 60870 60870 14420 14420 -14420 1 DIRECT ASSISTANCE - JETT GIVING FUND 33 803627 ACTUAL COST ACCESSIBILITY EQUIPMENT PART I, LINE 2: THE JETT FOUNDATION HAS ESTABLISHED THE JETT FOUNDATION GIVING FUND TO ASSIST DUCHENNE FAMILIES ACROSS THE UNITED STATES WITH A CHILD/CHILDREN DIAGNOSED WITH DUCHENNE MUSCULAR DYSTROPHY (DUCHENNE) WITH MUCH NEEDED FINANCIAL ASSISTANCE TO PURCHASE VITAL AND NECESSARY EQUIPMENT OR ACCESSIBILITY ITEMS THAT ARE EITHER NOT COVERED BY INSURANCE OR TOO EXPENSIVE FOR A FAMILY TO AFFORD. ASSISTANCE IS AWARDED TO QUALIFYING APPLICATIONS BASED ON THE ABILITY OF JETT FOUNDATION TO FUND THE GRANT(S). THE GRANTS ARE FUNDED THROUGH THE GENEROSITY OF THE JETT FOUNDATION DONORS. THIS JETT GIVING FUND IS DESIGNED TO BE A "MATCHING GIFT" PROGRAM WHEREBY APPLICANTS AIM TO RAISE 50% OF THEIR MONETARY NEED AND THE JETT FOUNDATION PROVIDES THE REMAINING FUNDING. IT IS DESIGNED TO BE FLEXIBLE TO ALLOW ELIGIBLE APPLICANT'S TO PURCHASE THEIR CHOICE EQUIPMENT OR ACCESSIBILITY ITEMS FROM QUALIFIED PROVIDERS/VENDORS. THERE ARE NO INCOME/AGE REQUIREMENTS OR RESTRICTIONS, HOWEVER APPLICANT MUST BE DIAGNOSED WITH DUCHENNE MUSCULAR DYSTROPHY. APPLICANTS ARE ELIGIBLE PER ANNUM AND PAYMENT WILL BE PAID DIRECTLY TO A QUALIFIED PROVIDER/VENDOR. FAMILIES WITH MULTIPLE ELIGIBLE APPLICANTS MAY APPLY ON BEHALF OF EACH CHILD. EQUIPMENT OR ACCESSIBILITY ITEMS MUST BE DEEMED MEDICALLY NECESSARY TO MEET THE REHABILITATION NEEDS AND/OR QUALITY-OF-LIFE GOALS SPECIFIC TO THE CHILD AND MUST BE CONFIRMED BY THE CHILD/CHILDREN(S) PHYSICIAN. THE JETT FOUNDATION GIVING FUND COMMITTEE WILL REVIEW ALL OF THE APPLICANTS AND DETERMINE IF ELIGIBILITY REQUIREMENTS ARE MET. THE COMMITTEE WILL BE COMPRISED OF DISINTERESTED BOARD MEMBERS AND SENIOR EMPLOYEES OF THE JETT FOUNDATION. NO DIRECTORS, OFFICERS OR EMPLOYEES OF JETT FOUNDATION WILL BE PERMITTED TO RECEIVE A GRANT AWARD. GRANT AWARDS WILL BE MADE ON THE BASIS OF ELIGIBILITY, THROUGH AN APPLICATION PROCESS. ALL CONFLICT OF INTEREST POLICIES AND PROCEDURES WILL APPLY AND BE FOLLOWED. ALL PAYMENTS WILL BE PAID DIRECTLY TO A QUALIFIED PROVIDER/VENDOR, NOT THE APPLICANT. THE COMMITTEE SHALL HAVE THE AUTHORITY TO GRANT AWARDS UP TO THE FUND AMOUNT PREVIOUSLY AUTHORIZED BY THE BOARD. THE COMMITTEE WILL REPORT TO THE BOARD A FINAL LIST OF RECIPIENTS AND AWARD AMOUNTS DETERMINED. THE GRANT RECIPIENTS WILL BE CONTACTED IN WRITING, AND UPON ACCEPTANCE, THE NAME OF THE RECIPIENT, THE QUALIFIED PROVIDER/VENDOR, AND AMOUNT OF THE AWARD WILL BE DOCUMENTED BY THE TREASURER. X X 0 0 0 0 0 0 0 0 0 ERIC SNYDER EXECUTIVE DIRECTOR 171957 0 0 0 0 0 0 0 14253 0 186210 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