Caregiver Resources

You are not alone. We offer a variety of resources to help in your journey as a caregiver of someone who has A-T.

Child Oslegers

Community

Learn more about Caregiver Weekends and how to connect with other A-T caregivers. 

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Child Brian 2

Guides

Read about the symptoms of A-T and clinical recommendations from A-T experts.

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Ornella3 (1)

Hospitals & Clinics

There are physicians and hospitals who have A-T experience. Let us introduce you. 

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Essential Files Request printed copies here!

Caring for People with A-T Guide

A complete guide to caring for people with A-T written by doctors at the A-T Clinical Center.

Quick Information Card

An information card for emergency rooms, school nurses, doctors and other healthcare professionals.

Upcoming A-T Webinars

Get registered for two webinars about A-T and A-T research this November that the A-TCP is co-hosting with the National Ataxia Foundation! 

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  • Archive - A-T Clinical Handbook
Oct 17, 2023 Nov 15 @ 1:33 pm

Chapter 1: Ataxia-Telangiectasia Overview

A-T signs and symptoms are distinctive yet vary widely in severity from person to person.

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Oct 17, 2023 Nov 15 @ 1:33 pm

Chapter 10: General Principles of Rehabilitation

Rehabilitation has a great deal to offer persons with A-T and their families.

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Oct 17, 2023 Nov 15 @ 1:33 pm

Chapter 11: Mobility and Gross Motor Abilities – Physical Therapy

Physical therapists help with gross motor difficulties, including problems with walking, mobility and posture.

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Oct 17, 2023 Nov 15 @ 1:33 pm

Chapter 12: Activities of Daily Living and Fine Motor Abilities – OT Recommendations

The role of occupational therapy is ongoing as new interests & needs arise and A-T brings new burdens of neurologic impairment.

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Oct 17, 2023 Nov 15 @ 1:33 pm

Chapter 13: School Learning and Social/Emotional Adjustment

Children with A-T, just as all children, have variability in their cognitive abilities.

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Oct 17, 2023 Nov 15 @ 1:33 pm

Chapter 14: Speech and Language

Speech and language abilities vary from one person with A-T to another, and vary over time in individual patients.

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Oct 17, 2023 Nov 15 @ 1:33 pm

Chapter 15: Assistive Technology for Written Communication

A-T symptoms can create difficulty for completing reading and writing tasks.

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Oct 17, 2023 Nov 15 @ 1:33 pm

Chapter 16: Lung Disease and Ataxia-Telangiectasia

Children and adults with A-T are at increased risk for respiratory problems.

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Oct 17, 2023 Nov 15 @ 1:33 pm

Chapter 2: The Gene (A-T) and its Gene Product (ATM)

The gene causing A-T (the ATM gene) was identified in 1995. This gene produces ATM protein.

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