Jett Foundation Inc

RESEARCH FOR DUCHENNE MUSCULAR DYSTROPHY

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.

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.

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.

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.