I was diagnosed with ALS at only 26 years old — back when I was a caregiver for my own mom who also has ALS. Until then, it never crossed my mind that I would get this disease. I felt our family had gone through so much already, and it would be impossible for me to also get diagnosed.
You see, we live with familial ALS, an R15L mutation on the CHCHD10 gene. This means you have a 50/50 chance of getting the mutation, and my diagnosis marks three generations in a row with ALS in my immediate family…my grandma, my mom and myself.
I was a busy wedding photographer before I was diagnosed. I would candidly photograph love on the weekends and help mom on the weekdays. But immediately after my diagnosis, I gave up my passion for photography entirely. A year later, I broke down after visiting my old photography website. I forgot how much joy it brought me…so I challenged myself to find a way to use my camera again. I knew it wasn’t going to be easy, but also knew it would be worth it.
Despite my prognosis, I choose to evolve with my circumstances by finding creative solutions to overcome my progressive limitations. I’ve hacked Frankie (my camera/wheelchair, short for Frankenstein lol). I quickly realized I was in love with street photography. I began taking Frankie into “dangerous neighborhoods while focusing on what I believe was mistakenly overlooked. I’ve learned how important it is to reveal the harsh realities of our over-filtered world.
I believe my ALS ice bucket challenge video similarly revealed the harsh overlooked realities of this devastating disease. Now that five years have passed, and all the ice has melted… I hope the awareness doesn’t evaporate with it.. I hope those who are affected by ALS continue to be vulnerable and share the difficult along with the positive. I hope we continue to support the pursuit of a cure, despite the mistaken impossibility of it. ALS is not incurable. ALS is underfunded and overlooked.
Learn more about Anthony and support his incredible photography by visiting his site HERE!