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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. They feel some sense of relief when they can share their stories with others who are going through the same situation.

With our Beacons of Hope series, we share their stories in hope they can provide you comfort. Show you how they not only embrace their diagnosis, but fight for finding a treatment. Not only do we find their stories aspirational, we believe these individuals are true beacons of hope. They provide us with the light that will get us through the darkness.  

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


  • Jun 17, 2019 Beacons of Hope

    Jack Sees a Different Life after LUXTURNA

    Jack Hogan was diagnosed with retinitis pigmentosa at only two-and-a-half years old. But with the help of connections made with the Foundation, Jack became the first-ever recipient of the FDA-approved gene therapy known as LUXTURNA.

  • Jun 3, 2019 Beacons of Hope

    Original Foundation Advocate Gertrude Weiss Celebrates 100th Birthday

    Gertrude Weiss was one of the early Foundation Fighting Blindness investors and advocates. Diagnosed with retinitis pigmentosa, Gertrude continues to live her life to the fullest. As a longtime friend, the Foundation honored Gertrude on her 100th birthday recently.

  • May 20, 2019 Beacons of Hope

    What Does “Blindness” Really Mean?

    Jenny Schisler has retinitis pigmentosa. Jenny wants to spread awareness of what having a visual impairment really means to her and others affected by retinal degenerative diseases.

  • Apr 26, 2019 Beacons of Hope

    Legally Blind Artist Paul Castle Expresses His Story through Art

    Paul Castle was diagnosed with X-linked retinitis pigmentosa at the age of 16, but continued to follow his passion for art. Now Paul is a full-time artist and donates 5 percent of his art sales to the Foundation.

  • Oct 16, 2018 Beacons of Hope

    A Boy with No Boundaries

    Kai Wang was 18 months old when he was diagnosed with the condition. His parents never imagined the extraordinary journey they would take with their son when they learned he had a condition that would render him blind.

  • Jul 27, 2018 Beacons of Hope

    Persevering to Success with the Support of Family, Friends, and Faith

    A story about living with retinitis pigmentosa.

  • Dec 17, 2017 Beacons of Hope

    Faith, Hope, and a Found Gene

    “I try not to get my hopes up too much, but I never lose hope; I’m determined. I just want to see my son’s face, see him get married, & see my grandchildren. I encourage everyone with a retinal disease to get a genetic test & to never ever give up hope.“

  • Oct 9, 2017 Beacons of Hope

    Joe Caruso: Giving Back

    Joe Caruso, founder of FOCUS Wine Foundation, knows life both with and without the ability to see. His first memory is sitting in the waiting room with his mother at the Scheie Eye Institute in Philadelphia.

  • Sep 20, 2017 Beacons of Hope

    Heather Presnar’s Story: Living with Stargardt Disease

    When you’re the catcher, the ball always comes to you. Heather Presnar wouldn’t have had it any other way.

  • Aug 7, 2017 Beacons of Hope

    Sight and Song: The Christian Guardino Story

    Christian Guardino has been singing for as long as he can remember; it’s the seeing that is something new.