Inspirational Voices from the Fighting Blindness Community

Being diagnosed with anything can be hard, and you certainly will go through a range of emotions. You are not alone. Many have been in your shoes and have dealt with their diagnosis in different ways. Some feel a sense of relief when they can share their stories with others who are going through a similar situation.

The Foundation Fighting Blindness is a beacon for those affected by blinding retinal diseases. With our Beacon Stories, we share individual’s journeys with their disease and how their drive fuels them to pursue their passions. Not only do we find their stories aspirational, we believe these individuals are true beacons of strength, champions of courage, and advocates for hope. We hope these stories provide you with light that will get you through the darkness. Collectively, we are stronger together – as a community.

Do you have a story you'd like to share with the Fighting Blindness community? Let us know at marketing@fightingblindness.org.

Beacon Stories

  • Jul 26, 2021 Beacon Stories

    Seeing Through Your Disability

    30-year-old Lance Johnson is a video editor and podcaster living in Brooklyn, New York. Despite being diagnosed with retinitis pigmentosa (RP) at a young age, Lance has never let his RP change his drive and passion for creating.

  • Jul 12, 2021 Beacon Stories

    Causes for Cures

    The faces behind RP Hope, Save Sight Now, and Sofia Sees Hope are all immensely dedicated to their nonprofit’s missions. The inspiration behind these organizations is similar, but their story and commitment are uniquely personal.

  • Jul 8, 2021 Beacon Stories

    Fighting RP on the Foundation’s Frontline

    Michelle Glaze, the Foundation’s associate director of professional outreach, shared her personal story of being diagnosed with retinitis pigmentosa (RP) in the film ‘Decoding disease.‘ In her own words, Michelle also describes her journey with genetic testing and the Foundation Fighting Blindness’ impact on her life.

  • Jun 21, 2021 Beacon Stories

    Blind YouTuber Finding His Spot in Life

    YouTuber Sam Seavey was diagnosed with Stargardt disease when he was just 11 years old. Sam didn’t fully accept his visual impairments until his early 30s. Now he’s helping others through “The Blind Life,” which is currently the most extensive resource for assistive technology on the internet.

  • Jun 7, 2021 Beacon Stories

    Birding By Ear

    From stargazing to bird watching, Michael has been an enthusiast of all things science from the age of 12. When Michael was diagnosed with retinitis pigmentosa at 30 years old, he knew he wasn’t going to give up his dream of becoming a record-setting birder. In his own words, Michael shares how he’s overcome his vision loss and continued to pursue his birding passions with “birding-by-ear.”

  • May 24, 2021 Beacon Stories

    Girl Scouts are Changing the World One Crosswalk at a Time

    Inspired by their troop leader diagnosed with Usher syndrome, Girl Scout Troop 1673 is hoping to change the world, one crosswalk at a time, with their Paint It Yellow challenge.

  • May 10, 2021 Beacon Stories

    A Mother’s Perseverance for Her Son

    After learning Preston needed to wear an eye patch, his mom Carmen wanted to find resources and support on eye patching, but she couldn’t pinpoint anything on the internet pertaining to children’s books about her son’s specific conditions. That’s when Carmen decided to write a children’s book to educate children and parents on why someone wears an eye patch.

  • Apr 26, 2021 Beacon Stories

    Ambitious Swimmer Spreading Optimism

    26-year-old Becca is a two-time Paralympic swimmer for Team USA, diagnosed with Usher syndrome type 1 (USH1) at only four years old. But she has never let her diagnosis with Usher syndrome stop her from doing exactly what she puts her mind to.

  • Apr 14, 2021 Beacon Stories

    Audio Interview of Foundation Fighting Blindness Board Director Karen Petrou on Her New Book and Living with RP

    American Banker dubbed her as “the sharpest mind analyzing banking policy today – maybe ever.”

  • Apr 12, 2021 Beacon Stories

    Discovering Confidence Through Vulnerability

    Fashion and Lifestyle Blogger Lindi Goff is sharing her authentic self by being vulnerable about her journey with Stargardt disease.