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Leukodystrophy Center Welcome Guide

We know how hard it is to care for a child with complex medical needs. We are here to support you and ease these difficulties any way we can. This guide was created as a resource for you and your family to navigate your care and partnership with our team at the Leukodystrophy Center.

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Stay Connected to the CFDT

There are many ways to keep in touch with fellow patient families and stay up to date on our latest news!

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Returning to School after a Concussion

This “return to learn after the summer” plan provides information on how you can help your child with concussion advance through the various levels of cognitive activity to promote recovery and prevent ongoing symptoms.

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Concussion Symptom Log

This worksheet is designed to help monitor and record concussion symptoms during the recovery process.

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Returning to Recreational Physical Activity after Concussion

The “return to play” plan outlines steps your child can follow to help them return to recreational physical activity after a concussion. It also provides examples of activities they can participate in at varying levels of intensity.

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Supplemental Security Income (SSI)

The SSI program makes payments to those age 65 or older, blind, or disabled persons (including children) who have limited income and resources. Social Security has a strict definition of disability for children (condition must seriously limit his or her activities; and must have lasted, or be expected to last, at least 1 year or result in death).

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RYR1 Foundation

Find information about RYR-1 muscle disease for patient and families and learn about the RYR-1 International Family Conference and ways you can get involved.

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