Jett Foundation Inc

Community and education:family workshops/community webinar series - 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 2024, jett foundation was able to continue in person events as well as hosting virtual our community webinar series. Jett hosted 22 webinars featuring clinical trials, duchenne care and wellness with over 400 registered participants.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. In 2024, 31 jett foundation ambassadors from 23 states engaged with families affected by duchenne throughout the country.family support/porch nite - launched in 2018 by two jett ambassadors and moms of children with duchenne. This national caregiver support program focuses on building stronger support systems for families affected by duchenne in their local community through story-telling, education, and grief-management. In 2024, we hosted 10 virtual porch nites with 273 participants. Additionally, jett foundation hosted three in person porch nites serving 29 participants. Educational care packages/newly diagnosed family education materials/series - a duchenne diagnosis is incredibly overwhelming for a family. Jett foundation educational care packages provide crucial educational materials to newly diagnosed families, caregivers, teachers and clinicians that are seeking more guidance on duchenne. Jett foundation provided over 250 care packages in 2024 to those who requested them from the organization's website or attended jett events or programs. These free educational resources include support letters from the community, jett foundation brochure and welcome letter, health insurance flight plan, clinical trial flight plan, gene therapy faq, transition of care checklist, clinical trial cheat sheet, dan and dmd children's book, standards of care and durable medical equipment booklet.

Advocacy and research: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. Although minimal in 2023 and 2024, 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.

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.