LCA-CRX Families

Just diagnosed?

1. Everyone responds differently to hearing you or your child has LCA.  Just know what you are feeling is okay.  Be kind to yourself and look to others for support.

2. Locate and enroll your child into your local early intervention program.  They will be able to assist you in getting your child the resources your family will need and teach you how to help your child in their development.

3. Find and talk to other families and support groups.  You are already doing this so Bravo! Talking to other families and blind individuals will help you realize that your child will lead a productive, successful life with the appropriate interventions and adaptations.  It is also helpful to know that there are people sharing a similar journey and will be there with advice and support.  The blind community is an amazing resource!

4. Educate yourself.  The local early intervention program and the blind community is a great place to start. There are also great resources that you can access online, such as Family Connect, National Federation of the Blind, and American Foundation for the Blind.  The Hadley Institute for the Blind provides free courses to help learn strategies to teach your child and learn Braille.

ABOUT US 

Drew’s Beacon for Blindness, a non-profit 501(c)(3) organization funds research with the hope of identifying a cure for LCA-CRX blindness.

Joseph Cardullo

T: 215-528-1056

E: jcardullo@drewsbeacon.org

Monica Picinich

T: 215-605-5926

E: mpicinich@drewsbeacon.org