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Dorie Shapiro

Usher 1F Stories

As most of you probably know, Usher 1F Collaborative raises money to help support and fund research for cures for the disease that I have – Usher’s Syndrome Type 1F. Concerning Mabat Latid, my goal is very simple: make a huge impact to raise money for a cure for Ushers Type 1F. I know that many of you do not know me personally and wonder, what does this have to do with me? I know that we are all supportive of each other’s philanthropies and I just wanted to share my story with you.

Unfortunately, I was born with Usher’s Syndrome Type One. However, my family and I were unaware of it until I was fifteen years old when we all read a news article that highlighted some of the symptoms of Usher’s Syndrome Type One that I was recently experiencing, including ailments of my eyesight. Subsequently, we went to a retinal specialist, and he confirmed our worst nightmare: in addition to being born profoundly deaf, I also had this devastating syndrome that causes significant amounts of eyesight loss.

Since then, my life has been very different. However, after conquering my deafness with my cochlear implant, I felt I could cope with this as well. And that is exactly what I have been doing for the past 10 years. However, I made a promise to myself and to my family that if I noticed further deterioration to my vision, I would be honest about it.

Nine years years ago, I decided to give up driving at night because it was getting really hard for me to see at night. Luckily, due to my most amazing support system, including my parents, my brother David, sorority sisters, and my friends, I did not have to give up my social life. I got rides to friends’ houses and other places at night without any issues. In addition, my family and friends have been amazingly supportive always offering their arm to help me walk in the dark as well as cruise through crowds at the parties and bars.

Unfortunately, more recently, my peripheral vision has gotten worse, and I cannot see things like I used to. Two years ago, I officially gave up driving altogether because I knew it was the best decision I could make for my safety and for the safety of others. While I know it is no longer safe for me to drive, I continue to struggle to accept the fact that I have given up such an important facet of my independence.

Without a doubt, my greatest fear is that I do not know what the future holds for me and for my ability to see. It is this fear that drives my determination and conviction to try and preserve my remaining vision. Therefore, I respectfully ask all of you, to join me in fighting Usher’s.