JOSEPH ROBERT SHAW FOUNDATION INC

In FY 2023 Joey's Foundation provided $100,000 as the supporting organization and financial sponsor of the inaugural year of the BFit Power-based Exercise Program in Northern Virginia. The complimentary program included two full sessions: the first in the Fall of 2024 and a second session in the Spring of 2025. The program was so successful that Joey's Foundation is now preparing to move forward with a second year of two full sessions at the cost of $100,000. By word of mouth the reputation of the program has spread throughout the disability community, and parents are eager to have their children enrolled. The BFit program encourages physical activity and participation for children with cerebral palsy (CP), the most common motor disability in childhood, affecting an estimated 500,000 to 700,00 children and adults in the United States. CP is a collection of non-progressive conditions affecting the brain. Impairments are caused by abnormal development of the nervous system characterized by spasticity, muscle weakness, and poor motor control. This vulnerable population is often excluded from participating in community-based physical activity. The BFit program's supportive social environment reduces barriers to participation and focuses on increasing not only physical but also social functioning. The 12-week program consists of two 60-90 minute activity sessions each week. Outcome measures for each participant are based on standardized assessments done at the start of the program with goals set by the participants and their families. BFit enables adolescents with physical disabilities to pursue their desire to participate in recreational sports and increase physical activity. With positive reinforcement and increased self-esteem, participants learn that they are capable of participating in many different types of exercises, utilizing a variety of equipment and learning new motor skills. The program implementation requires exercise space, equipment, program coordination, volunteer trainers from local physical therapy schools, and medical oversight. Participants demonstrate improved functional outcomes, mental health and socialization. An additional benefit of the program is the hands-on experience for the physical therapy students who volunteer to work with these children. Under the oversight of licensed physical therapists, these students are responsible for administering the exercise programs, documentation, set up, break down (including cleaning), nightly feedback, and outcome measures. The volunteer students meet with the MedStar Health professional staff before and after each session to discuss each child's needs, develop appropriate exercises based on individual needs, and review outcomes and progress. The volunteer students benefit from the hands-on learning experience with the children and from the professional mentoring of the MedStar National Rehabilitation Network physical and occupational therapists.

In FY 2023 Joey's Foundation committed to providing a total of $25,000 in travel funds for patients to get to and from their research sessions using the PediaCORE system at Kennedy Krieger Institute. The success of the clinical trials requires gathering data from a large number of participants. Removing the barrier of transportation would allow a greater number of patients to enroll and participate in free physical therapy. Current treatment options for children with movement disorders can be costly and fail to fully engage young participants. PediaCORE is a system developed by the staff at Kennedy Krieger Institute based on discussions with engineers and pediatric physical therapists. It is an affordable, touch-interactive device with customizable games to engage young children in physical therapy goal-driven exercises. Kennedy Krieger is currently studying how the dosage of training with the PediaCORE system compares to traditional physical therapy. This is an important step towards optimizing dose to produce meaningful change in movement control. A significant number of visits are necessary for patients to complete the study. Funds from Joey's Foundation will ensure 30 research participants have transportation for 12 study sessions. This support will have a positive impact on both the patients and families who will benefit from PediaCORE as well as the research team. Clinical trials hold promise for patients to have better, more fulfilling lives through the discovery of new therapies. The knowledge gleaned could impact hundreds of thousands of individuals with developmental brain disorders.