CVIers Discussion Group for Parents and Older Children with Cerebral Visual Impairment

Communication, Information, Advocacy, Research
A group for parents of children and children with Cerebral/Cortical Visual Impairment (CVI) supported by clinicians, researchers and teachers of the visually impaired. 

Information, Communication, Advocacy and Research

The purpose of this group is to provide a centralized space for individuals -- including family members, researchers, doctors, educators, and more -- to discuss topics related to CVI. We specifically hope to create a safe environment in which we can achieve the following:

  1. Parents will be able to discuss the challenges they face with their children with CVI. We aim to provide a forum for parents to share their own experiences while learning from other parents. 
  2. Older children will be able to discuss their own experiences living with CVI. They may contribute their own strategies for tackling shared difficulties, or choose to elicit advice from their peers. 
  3. Everyone will gain access to reliable and understandable information regarding CVI. We will also invite experts to share their knowledge.
  4. Researchers will provide updates on recent developments in the field of CVI. 

Group meetings will be held every 6 - 8 weeks via a secure online platform sponsored by Smith Kettlewell Eye Research Institute (SKERI), San Francisco and hosted by Dr.Chandna's SeeLab at SKERI. We expect meetings to last for approximately 1.5 hours. 

Our next meeting is: April 15th  2024 at 12 pm PST/2 pm CST/3 pm EST/8 pm GMT

How You Can Participate

How to RenameIf you haven’t already, please rename yourself in Zoom to include your role, for example, if you are a parent, CVIer, clinician, educator, etc. To do this, select the “Participants” button. When the list of participants comes up, click the three dots after your own name, and “More.”  You’ll see “rename” is one of the options. Or, please let Dev know and he can help with renaming.

  • Put your question in the chat
  • Raise hand feature
  • Verbally state your name

To ensure the space be accessible to all, thank you very much for using one of the three ways to make your request to speak known, and hold your comments until you are recognized, so we can hear each valuable comment.

Meeting Guidelines

This meeting is for Parents of Children with CVI, and Older Children with CVI (with their parents and carers). Adults with CVI who wish to share their journey to help Parents and their Children with CVI are very welcome! In a Supporting Role, attending by invitation, are Clinicians, Researchers, Teachers, and Educators. Here are some guidelines to help the meeting run smoothly and clarify expectations:

  • It is very helpful for blind and CVI attendees if we speak our name before giving our comment, such as “Katie here,” or “Katie speaking.”
  • This CVIers Discussion Group includes older children and adults discussing their own lived experiences of CVI and parents of CVIers discussing their observations and experiences of their children. In this space, participants may not reinterpret or deny the personal experiences shared by participating CVIers or parents.
  • What is shared in this meeting is often personal. Please do not share material from this meeting outside of this meeting.
  • Please stay muted until you would like to speak.
  • Strictly no distribution of recordings or the Zoom link, downloading or copying any content at the meeting or after the meeting.
  • If you have questions or suggestions for future topics, you are warmly invited to write to us at seelab@ski.org.

Recording disclosure

The meeting today will be recorded. A video version of the prepared presentations will become available online with permission from our speakers. The discussion section will be available as audio recording, on request. You will soon see a button informing you that recording has begun; if you wish not to be recorded, you may turn off your video, or leave the meeting.

 

Register by clicking here if you are interested in joining our discussion group, or if you would like to learn more about CVIers Discussion Group.

If you are interested in joining or have any questions, email us at seelab@ski.org