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October 31, 2018 58 mins

Sisters Anna Ault and Lori Kinney are raising daughters with visual impairments. One has cortical visual impairment, the other an ocular visual impairment. We discuss their parallel but unique experiences advocating for CVI and Leber’s congenital amaurosis.

They are raising their kids in the same community – their childhood community, in fact. Their girls are close in age and attend the same public-school system. But as Anna and Lori compare their experiences, it becomes evident that there are fundamental differences between a brain-based visual impairment and an eye-based one.

In this episode:

  • Resources for getting up-to-speed on a visual diagnosis.
  • The prevalence of CVI and the rarity of LCA.
  • The effect of CVI and LCA on day-to-day activities.
  • IEPs and school services.
  • Giving back.

Resources we mentioned:

Pediatric Cortical Visual Impairment Society (PCVI Society)

The RDH12 Fund for Sight

The American Conference on Pediatric Cortical Visual Impairment

2018 CVI Symposium hosted by Perkins School for the Blind

Olivia’s Pediatric CVI Society Fundraising Page

Start Seeing CVI Advocacy

 

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