Jett Foundation Inc

JETT FOUNDATION PROVIDES DIRECT SERVICE AND SUPPORT FOR FAMILIES AFFECTED BY DUCHENNE MUSCULAR DYSTROPHY.

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.

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.

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.

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.