Welcome Care Professionals

We know our FRRS1L kids require all types of professional care; from pediatricians, to neurologists, dietitians, therapists, and more. The list goes on and on. FRRS1L kids depend on their care team to help keep them as healthy as they can be, until we can get a cure!

From all the FRRS1L families - Thank you care professionals!

Join our FRRS1L Care Professionals in sharing ideas

Care Professionals

  • Neuro Genetics

    coming soon

  • Neurology

    Coming soon

  • Speech Therapy- Eye Gaze Communication

    Our FRRS1L client, currently uses an Accent 1400 eyegaze speech-generating device (SGD) for overall functional communication. She uses a modified, 28 location layout (with some icons hidden) to communicate her wants and needs. She is consistently combing 2-3 icons together to request highly motivating items/activities (i.e. "play eyegaze game", "want play toy", etc.), to direct and protest activities (i.e. "Want go more", "like stop", etc.), and to make a variety of social comments (i.e. "that cool", "like that", etc.). She has also continued to demonstrate increased accuracy and independence in navigating to alternative overlays (i.e. "groups", "colors", "animals", etc.) to locate fringe vocabulary words. Several strategies that have been beneficial in facilitating communication with her include: beginning each session with an eyegaze game (within the Timocco software) to encourage eye movement to various quadrants of the screen, wait time, aided language input, modeling of target words/phrases, gestural cues to direct her attention to the device, and visual/verbal cues. Our FRRS1L client continues to be especially motivated to use her device to communicate socially with her family members, caregivers, and therapists and has demonstrated excellent progress with the use of it since she received it in July of 2021.

    ~ Chelsea, Speech-Language Pathologist

  • Physical Therapy

    Coming soon

  • Occupational Therapy

    Coming soon

  • Ophthalmology

    Coming soon

  • Dietician

    Coming soon

  • Pulmonology

    Coming soon