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: February 26th  2024 at 12 pm PST/2 pm CST/3 pm EST/8 pm GMT

The agenda for our next meeting is as follows:

Topic: For Parents of Children with CVI and Adults with CVI
Summary and Update: About our next Discussion Topic: About our next Discussion Topic: Our next meeting, on February 26th, will include a presentation and discussion by Dr. Chandna on the typical visual development in contrast to CVI signs and behaviors in babies and young children in the home environment. Dr. Chandna will highlight observable ways CVI may be noticed by the parents and communicated to the child’s doctors, and how parents are in a capable role to continue observation and gathering information about their baby/young child. The presentation will be followed by a longer discussion on the presented topic, as well as what parents and CVI group members have found to be working/successful or challenging in recent weeks

Discussion:
We are looking forward to your participation at this meeting. After providing a summary of this presentation we will be inviting all parents  to contribute to the discussion. We have a chance to make a difference. Let us discuss how we can .

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