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Living with NBIA During the COVID-19 Pandemic


Summary of the April 14, 2020 Webinar: Living with NBIA During the COVID-19 Pandemic

Here is a brief summary of the information provided by NBIA doctors and experts during the webinar.
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Emergency Information Form for Children with Special Needs

It’s important to have a completed, up-to-date Emergency Information Form at the ready should your child need hospitalization. Set a date to update once a month as you don’t want to be filling in this form when faced with an emergency.

Here’s a link that gives more information about the Emergency Information Form and an online fillable one that you can easily update:
View Forms


Webinar Recording: Living with NBIA During the COVID-19 Pandemic

Having a family member with NBIA during the COVID-19 pandemic presents a whole new layer of challenges. How do you protect loved ones with NBIA? Should you take them outside the house or let anyone in? How do you maintain their therapies and skills during a time of social isolation? What if they are in a clinical trial? And what should you do, if God forbid, they contract a serious case of the illness?

The panelists are Dr. Susan Hayflick, Dr. Penelope Hogarth and Allison Gregory of Oregon Health & Science University, and Katie Flores, a speech pathologist from Open Door Pediatric Therapy in Houston, Texas. Patricia Wood, President of NBIA Disorders Association will be the moderator.

TOPICS:

  • Specific medical problems that increase risk for serious complications from COVID-19
  • How to keep your loved one safe
  • Special considerations for NBIA individuals in clinical trials
  • Making a plan if your loved one falls ill
  • Coping with an extended absence from necessary therapies
  • Telehealth therapy sessions for home exercise programs


Teletherapy Presentation

Katie Flores, a speech language pathologist at Open Door Pediatric Therapy in Houston, Texas, addressed coping with the absence of regular therapy sessions and finding other options. Here are the slides from her talk.
View Slides

 

 

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