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

  • 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.

  • Mar 22, 2021 Beacon Stories

    A Family Full of Hope

    18-year-old Marty Dubecky has a very unique decision to make. There are currently four gene therapy clinical trials for him to choose from to enroll in, which would have been unheard of 15 years ago when he was first diagnosed with XLRP.

  • Mar 8, 2021 Beacon Stories

    George Dolan: Cherished Friend and Community Advocate

    George was well-known in his community for his integrity and dedication to helping everyone around him.

  • Feb 22, 2021 Beacon Stories

    Managing Your Mindset, Embracing Your Voice

    Charity’s recent rapid decline in vision due to RP and her daughter’s diagnosis with RP has caused her to open up about her vision loss journey. After getting involved with the Foundation, Charity now feels like she has a voice to help others in the visually impaired community.

  • Feb 8, 2021 Beacon Stories

    Erin’s Unwavering Determination, Then and Now

    Diagnosed with retinitis pigmentosa at a very young age, growing up, Erin never let her progressive vision loss stop her from keeping up with her friends and siblings. Throughout the 1990s, Erin was featured in several Foundation Fighting Blindness campaigns to raise funds for retinal research. Today, 34-year-old Erin is resilient as ever, still hopeful research will one day find her a cure.

  • Jan 25, 2021 Beacon Stories

    Looking Past RP with Hope

    Jenny was diagnosed with retinitis pigmentosa (RP), just like her mom, at the age of 34. In her own words, Jenny shares her experience with being diagnosed with RP and her journey to accepting it with hopefulness.

  • Dec 21, 2020 Beacon Stories

    Hannah’s Bright Future Ahead

    At seven years old, Hannah had never seen a lightning bug in the summer or a star in the sky. But after her treatment with LUXTURNA, Hannah can now play outside at night with her brothers and has a new bright future in store.