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Podium Speaker: Brendan Creemer; USH2018 Patient Symposium, 21 July 2018

Age: 19 years

Student at Lewis & Clark College, Portland, Oregon

Hometown: Palo Alto, California

Dear fellow community members with Usher, families, and researchers,

Imagine, for a moment, that you are a child who has recently discovered he or she has Usher Syndrome. You are probably between 9 and 15 years of age, living a pretty normal life so far. You go to school, hang out with friends, play with toys, and have fun. You are simply cruising through life, nothing will go wrong . . .  right? Then, one day, completely out of the blue, your parents tell you that you have Usher syndrome, and that your eyes don’t work as well as they’re supposed to. In that moment, you feel like your whole life was a lie. You are DEVASTATED. You isolate yourself from your friends. You give up all of your big life goals, fearing that there’s no way out of this dark future that looms ahead.

I AM NOT THAT PERSON.

Instead, I am the person who, upon realization, does not see Usher as a threat. I am the kind of person who takes action, the person who reaches out, who is motivated, who is resilient,  who knows that there is some solution out there regardless of how awful the situation seems.

Let me tell you a story, a story of how I found out I had Usher syndrome, stayed motivated, and eventually won several victories in the war against this dreadful disease.

I was diagnosed when I was very little, but my parents withheld the truth from me until I was ten. For the next four and a half years, I dismissed it, thinking it was not going to be an issue at all because I was pretty happy with the way things were going for me at the time. In the middle of ninth grade, however, I became aware. I was upset with the intense accommodations I was receiving in school at the time because I had grown out of many of them. At the same time, I learned about biotech in my biology class and had just learned about genetic mutations. It was in that moment when I realized that all of my current problems could be traced back to a single mutation in my DNA. Immediately after that, I decided to pursue biotechnology as a career, whilst swearing a personal oath to cure Usher before I lost too much vision. In the meantime, I would raise money for the research that was currently going on in order to give as much support as I could.

During my sophomore year, I began my own personal war against Usher syndrome. Working together with the Bryant Street Garage Fund (now renamed Think Fund), an organization in Palo Alto, CA, that helps teens run programs, I got together a group of people and planned an Open Mic/Talent Show event where all of the proceeds went to Usher research, and raised over $700 for Ed Stone’s research at the University of Iowa! Additionally, I was able to spread awareness to the community. We named our group Science for Sight and continued to hold more fundraisers the following year when I was 16. Unfortunately, I had to shut down the club at the end of the year because we weren’t having as much success as before and the rest of my group lost interest in the project. I did not give up hope, however. During that time, I was getting more and more involved in my Jewish youth group, BBYO, and saw another opportunity. At the start of each semester, my chapter would choose a new “StandUP Cause,” a Jewish organization that we would spend the entire term raising money for. Since Usher syndrome Type 1F, the kind I have, is fairly common in Ashkenazi Jews, I decided that it would be a perfect idea for a StandUP Cause. Together with my chapter’s Aleph Shaliach, or Vice President of Judaism & Community Service, we made Usher syndrome our StandUP Cause. The guys in my chapter, which I would like to acknowledge as Simon Wiesenthal AZA #2524 of Central Region West #45 of the International Order of the Aleph Zadik Aleph, worked tirelessly throughout the winter 2017 term to raise money for the cause. We created a GoFundMe page, and, after hosting a call-a-thon towards the end of the term, raised almost $2,000 dollars for Usher syndrome! My senior prom and graduation occurred soon afterward, so it felt like a real victory to me. Right around that time, I heard that the mouse model for Type 1F had finally been produced, which only further strengthened that victorious feeling.

Nowadays, I am in college, slowly working my way towards a degree in biotechnology, where I can tackle this disease head-on. But I can’t do it alone. I will need your help. So with that, I have one final message for all of you.

To the people close in age to me with Usher syndrome:  YOU have the power to change things. YOU  have that ability to reach out to your community to spread awareness and to raise money. YOU have that choice to either give up and assume everything is hopeless or choose to take action and not only help yourself but others around you as well. You have that potential inside you to become a GAMECHANGER – one who motivates and inspires those around them in ways never seen before. YOU  have that potential to do amazing things.

To the families – especially to those of very young children. You may not see this, but your child has the potential to do great things. Your children have the potential to become famous as if they were the next Albert Einstein or John F. Kennedy. If they are older, now is the time to start encouraging them. If they are toddler-age, simply encourage them when they are older. Spread the message of how I took action instead of giving up in order to help others as well as myself. Inspire them to make their own impact on the world. Motivate them to be  GAMECHANGERS to join me in my quest to cure Usher syndrome.

To the researchers – thank you for all of the hard work you have done so far, and I wish you the best of luck with continuing the study. To the families – thank you for supporting your children as much as you have and I hope you continue to support them further. To those with Usher,  do not give up. You have that power to change things – use that to your advantage. Fellow community members, families, and researchers -  let’s eradicate this disease.  Thank you.

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