Joseph Robert Shaw Foundation Inc

PROVIDING FINANCIAL SUPPORT TO INDIVIDUALS, ORGANIZATIONS OR OTHER ENTITIES ENGAGED IN RESEARCH, EDUCATION, AND INNOVATION RELATED TO CHILDREN WITH BRAIN INJURIES, THEIR TREATMENT, REHABILITATION, RECOVERY AND ACTIVITIES OF DAILY LIVING.

JOEY'S FOUNDATION IS THE SUPPORTING ORGANIZATION AND FINANCIAL SPONSOR OF THE BFIT PROGRAM IN NORTHERN VIRGINIA. BFIT ENCOURAGES PHYSICAL ACTIVITY AND PARTICIPATION FOR CHILDREN WITH CEREBRAL PALSY (CP), THE MOST COMMON MOTOR DISABILITY IN CHILDHOOD, AFFECTING AN ESTIMATED 500,000 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 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 A LOCAL PT SCHOOL AND MEDICAL OVERSIGHT. PARTICIPANTS DEMONSTRATE IMPROVED FUNCTIONAL OUTCOMES, MENTAL HEALTH AND SOCIALIZATION.

JOEY'S CORNER PROVIDES BOOKS FOR CHILDREN WITH AND WITHOUT DISABILITIES. THE ORGANIZATION IS ENGAGED IN THE CREATION AND DISTRIBUTION OF MULTISENSORY ADAPTIVE BOOKS FOR CHILDREN WITH MOTOR SKILL IMPAIRMENT. ADAPTED TEXT AND SYMBOL-SUPPORTED VERSIONS OF READING MATERIAL WILL BRING BOOKS TO LIFE IN A VISUAL AND PHYSICAL WAY. PROPS LIKE PUPPETS OR TOYS ENHANCE A STORY AND INCREASE UNDERSTANDING. RENOVATED, LAMINATED COPIES OF IMAGE OR CHARACTERS MAKE THE READING MATERIAL INTERACTIVE. FINALLY, THE USE OF SPEECH-GENERATING DEVICES ALIGNED TO A TEXT WILL INCREASE INTERACTION AND UNDERSTANDING OF THE STORY. MULTISENSORY BOOKS ARE CREATIVE, FUN AND ENHANCE COMPREHENSION.

JOEY'S FOUNDATION IS PROVIDING 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.

JOEY'S FOUNDATION SUPPORTED THE FAITH AND FAMILY FOUNDATION DBA WHEATLAND FARM IN THE PURCHASE OF ASSISTIVE TECHNOLOGY USED IN ADAPTIVE AND THERAPEUTIC HORSE RIDING. DUE TO THEIR VARIOUS PHYSICAL, COGNITIVE, LEARNING, AND DEVELOPMENTAL DISABILITIES, MANY RIDERS CANNOT CORRECTLY POSITION THEIR BODIES IN THE SADDLE WHILE RIDING. THIS PRESENTS A SAFETY AND LEARNING CHALLENGE AS THEY STRUGGLE TO OVERCOME THEIR POSTURAL MISALIGNMENT AND LIMB WEAKNESSES WHILE NAVIGATING A LARGE ANIMAL MOVING THROUGH SPACE. USING VARIOUS STRAPS, STABILIZING DEVICES AND ADAPTED REINS PROVIDES THEM WITH THE STRENGTH, BALANCE, PROPRIOCEPTION, AND STABILITY NEEDED TO MEET THE PHYSICAL AND COGNITIVE CHALLENGES OF RIDING WITH A DISABILITY.