Jett Foundation Inc

Programs: Direct service:(a) 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 2017, jett served 94 campers and worked with over 100 volunteers across 3 weeks in 3 different geographical locations, east, west and the rockies. 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. (b) jetting for success - in late 2017, jett foundation launched a new program, jetting for success, aimed at supporting young people as they pursue a college education. (c) 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, we provided six vans, one van conversion, one rotating bed, two stair lifts, and one scooter in 2017. (d) jettride - the jettride connects siblings and cousins of people with duchenne with other families affected by duchenne across the country and gives these individuals the opportunity to connect with other teens who are living through the same experiences in order to build lifelong friendship. In 2017, jettride began in curtice, ohio and ended in point pleasant, new jersey. Nine young riders with siblings, cousins, and friends with duchenne visited and engaged with over 20 families affected by the disease and hundreds of members of the public.

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 2017, 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 like 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. 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. The community ambassador programlaunched in 2017, this program aims to spread 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. Community care initiativethe community care initiative is an initiative launched in late 2017 to provide educational resources to people and families affected by duchenne muscular dystrophy. In 2017, jett foundation released the dan and dmd book under the community care initiative.

advocacy:the jett foundation's work in patient advocacy has been focused on educating regulatory agencies and industry partners on the needs and priorities of patients with duchenne muscular dystrophy in hopes to accelerate the pathways to finding treatments for this fatal disease. In 2017, jett foundation also began advocacy efforts surrounding reimbursement to ensure that patients living with duchenne have access to all fda approved therapies that might help extend or improve their lives.

research:although minimal in 2017, 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.