Welcome to Clearly Seeing Blind, the blog written by the youth patient advocates of the Curing Retinal Blindness Foundation. I am Olivia Hoffman and I created this blog as a way for all of us to share our experiences and stories with all of you. Our foundation works towards finding a cure for the CRB1 gene mutation through fundraising and spreading awareness in our communities. We have families from various countries around the world working towards the collective goal of finding a cure. As the youth of the foundation we try to contribute as much as we can to help our parents to find a cure for our disease. What better way is there to do that than by sharing our experiences with the world through a blog written by all of us? We can write down our thoughts and views of the world so that you may be able to clearly see what it is like to be blind.
Meet our team of writers, the youth patient advocates of the Curing Retinal Blindness Foundation. Get to know us before learning our stories.
Olivia Hoffman – Ohio, USA
I’m Olivia Hoffman and I am a ninth grader in Salem, Ohio. For the last ten years I have been dancing and just a couple of years ago began to compete. I am a proud vegan and love all animals more than most people. Whenever possible I have a book in my hand and find myself writing just as much. My education means a great deal to me and I always push myself to do the best that I can, considering the fact that I am a perfectionist.
When I was four I was diagnosed with LCA-CRB1 and my vision has been slowly decreasing since then. I am legally blind in my left eye but can still manage fairly well with my current vision abilities.
Cora Castro (As narrated by her mom, Brittany) – New Jersey, USA
Hello! I am Cora Castro and I am a 15 month old little girl, currently making my place in the world in Cape May, NJ. I have an older brother, Kai, who is 2 and my parents, Andres and Brittany, better known to me as Mom and Dad. My Dad is active duty in the Coast Guard so our home is anywhere the Coast Guard sends us. I love music and dance anytime I hear it. I love feeling different textures, whether it be with my hands or my mouth.
I was diagnosed with LCA-CRB1 at 8 months and since then, my vision has remained fairly stable. But it is difficult for me to see when it is dim lighting, distinguish details like items on pages of books, or if things are more than 5-10 feet away from me. That doesn’t stop me though! My hearing helps me identify things around me and I have no fear exploring my surroundings with my hands and even my feet. Sometimes I may run into an obstacle, but who in this world doesn’t? There is nothing that you cannot do when you have a vision to succeed, regardless of how much sight you have.
Gracyn Smith – Pennsylvania, USA
Hi my name is Gracyn Smith. I am 16 years old and currently a junior in high school where I am active in student council, chorus, concert choir and musical. Outside of school, I study several genres of dance, voice and piano. I also really enjoy several forms of art, including drawing and painting and spending my free time with my best friend, my 10 year old dog, Bella.
I was diagnosed with CRB1- RP at the age of 5. Currently my central vision is 20/70 and I have pretty much lost all my peripheral vision. I try as much as possible to maintain a positive outlook because I know a cure is coming!
Alejandra Timmer - Australia
Hi, I am Alejandra Timmer. I’m in ninth grade. I love watching anime. I love playing music, I have been playing piano for almost ten years now and I have been playing cello for three years, and even when I’m not playing music I’ve usually got a pair of head phones over my ears. I’m not a very sporty person however I have been doing gymnastics and swimming for quite a while now.
I love learning new things. My favourite subject in school is biology. and due to my vision loss I had to learn how to read and write braille last summer. I have been using a white cane for about five years. When I was seven months old I was diagnosed with Retinitis Pigmentosa, Nystagmus and strabismus (lazy eye). I have been slowly losing my vision ever since, I am now at the point where I am completely blind in my right eye accept for light and shadow perception, and in my left eye I only have about roughly 10 degrees of central vision.
Hi! I'm Olivia Hoffman and I created Clearly Seeing Blind as an outlet for us as the kids of the Curing Retinal Blindness Foundation where we can rant about our miseries and gush about our successes. Besides that, I also had the hope that this blog would reach others who wanted to learn more about what is like to live as a blind kid or even those who are struggling under similar situations and are looking for even proof that they are not alone. This blog isn't just about its writers but how its writers affect its readers. If you as a reader have anything to say about Cleary Seeing Blind such as suggestions or even just sharing your thoughts with us please email me. I would love to talk with you!
For comments or suggestions on Clearly Seeing Blind, email me at email@example.com.
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