Organization: JETT FOUNDATION INC
Mission: RESEARCH FOR DUCHENNE MUSCULAR DYSTROPHY
Activities: DIRECT SERVICE:CAMP PROMISEJETT 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 2019, JETT SERVED 94 CAMPERS AND WORKED WITH OVER 150 VOLUNTEERS ACROSS THREE WEEKS IN THREE DIFFERENT GEOGRAPHICAL LOCATIONS, EAST, WEST AND THE ROCKIES. IN 2018, JETT SERVED MORE THAN 88 CAMPERS AND WORKED WITH 100 VOLUNTEERS. IT IS NUMBERS LIKE THESE, IN ADDITION TO THE INTANGIBLE MEMORIES OF CAMP, THROUGH WHICH WE MEASURE AND BELIEVE IN THE MAGNITUDE OF THE IMPACT OF CAMP PROMISE.JETTING FOR SUCCESSIN 2019, JETTING FOR SUCCESS WAS LARGELY UNDER REVIEW. THE ADMINISTRATION SPENT THE BULK OF THE YEAR EVALUATING 2018'S PROGRAM PERFORMANCE AND OUTCOMES. AT THE CONCLUSION OF THIS EVALUATION, IT WAS DEEMED THIS PROGRAM COULD BE IMPLEMENTED MORE EFFECTIVELY AND EFFICIENTLY WITHIN OUR PROGRAM OFFERINGS AT CAMP PROMISE. THIS SHIFT WOULD ALLOW FOR A MORE PERSONAL, ONE ON ONE APPROACH TO OUR CAMP PARTICIPANTS. THIS CHANGE WOULD TAKE EFFECT IN 2020.JETT GIVING FUNDJETT 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 TEN VANS TO FAMILIES IN 2019. IN 2018, JETT PROVIDED SIX VANS AND ONE STAIRLIFT TO FAMILIES.
READY. SET. JETT. EDUCATIONAL PROGRAMMING:FAMILY WORKSHOPSJETT 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 2019, JETT FOUNDATION HOSTED EIGHT WORKSHOPS IN EIGHT DIFFERENT MAJOR CITIES ACROSS THE UNITED STATES, SERVING OVER 400 PARTICIPANTS. IN 2018, JETT FOUNDATION PUT ON 12 FAMILY WORKSHOPS IN 12 MAJOR CITIES ACROSS THE UNITED STATES AND SERVED OVER 250 PATIENTS AND FAMILY MEMBERS. DURING THESE WORKSHOPS, DUCHENNE CLINICIANS, PHARMACEUTICAL COMPANIES IN THE DUCHENNE SPACE, AND LOCAL EXPERTS PRESENT ON TOPICS SUCH AS CLINICAL TRIALS, STANDARD OF CARE, PHYSICAL THERAPY AND ADAPTIVE SPORTS. PATIENTS AND FAMILIES ALSO USE OUR FAMILY WORKSHOPS AS A VENUE TO CONNECT WITH EACH OTHER, OFFER EMOTIONAL SUPPORT, AND LEARN ABOUT HELPFUL RESOURCES AND DIRECT SERVICE PROGRAMS LIKE CAMP PROMISE, JETTING FOR SUCCESS, JETTRIDE, AND OTHER READY. SET. JETT INITIATIVES. JETTRIDEJETTRIDE 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 PROGRAMLAUNCHED 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 2019, 18 JEFF FOUNDATION AMBASSADORS ENGAGED WITH AN ESTIMATED 200 FAMILIES AFFECTED BY DUCHENNE THROUGHOUT THE COUNTRY. IN 2018, 12 JETT FOUNDATION AMBASSADORS ENGAGED WITH AN ESTIMATED 75 FAMILIES AFFECTED BY DUCHENNE THROUGHOUT THE COUNTRY. NEWLY DIAGNOSED FAMILY EDUCATION MATERIALS/SERIESA 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. IN 2017 AND 2018, JETT FOUNDATION RECEIVED OVER 520 REQUESTS FOR THE DAN AND DMD CHILDREN'S BOOK.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. IN 2019, JETT HOSTED TWO MEETINGS.
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.
NTEE category: Voluntary Health Associations & Medical Disciplines
Secondary category: Health Care