Brendan Gellman has built a successful marketing career in some of the biggest cities in the country. He’s lived an amazing life in New York, Los Angeles, and Chicago. No city was too big for him to feel at home.
He did it all, despite suffering from significant hearing loss, night blindness, and tunnel vision.
Brendan has Usher Syndrome, a very rare genetic disorder that has affected him since birth. His hearing loss is severe, and it will remain constant throughout his lifetime. When he was born, researchers didn’t even know what Usher Syndrome was.
“I was diagnosed with a hearing loss at two-and-a-half years old, so I’ve been wearing hearing aids ever since.”
The other main symptom from Usher Syndrome is degenerative vision loss. Known as Retinitis Pigmentosa or RP, this is an inherited disease that causes vision loss due to dysfunction and death of cells in the back of the eye known as photoreceptors.
“I had perfect vision from my childhood, and the summer between high school and college is when I just started to notice I was struggling a little in the dark and at night.”
That’s when Dr. David Boyer came into the picture.
To Brendan, Dr. Boyer is a family friend. To the rest of the world, he is a renowned retina specialist and stem cell researcher. Dr. Boyer provided Brendan a diagnosis of Usher Syndrome and an introduction to the world of stem cell research.
Brendan continues to live with his condition with help from friends and family, and he recently joined Americans for Cures as a Patient Ambassador.
“I know how important and incredibly exciting stem cell research is for not just myself, but for so many people with different conditions. I just want to help get the word out, because it is going to be critically important for our future.”
Although there are currently no cures for Usher Syndrome, California Institute for Regenerative Medicine (CIRM) has helped to fund multiple clinical trials attempting to treat the vision loss that comes from RP with stem cells. In a trial run by jCyte, a cell therapy company, patients undergo a simple in-patient treatment with a stem cell known as a retinal progenitor cell. These stem cells are injected into the back of the eye where they can support the function of the photoreceptors that are affected in RP. This treatment could both protect the cells and thus preserve, or even restore, sight for those on the path to losing vision.
Looking towards the future, Brendan is determined to continue spreading awareness of this research and what it could mean for thousands of patients suffering from many different conditions.
“Stem cell research has the ability to so dramatically change people’s lives for the better. For those of us with genetic conditions, that could mean altering our genetic DNA so we no longer worry about passing on our genes and our conditions to our children.”