My Journey with Retinitis Pigmentosa and the Foundation Fighting Blindness

By Zach Lovell

My name is Zachary T. Lovell, and I have been asked to share my journey regarding my retinitis pigmentosa (RP) diagnosis, how it led me to get involved with the Foundation Fighting Blindness, and how it crafted my Legacy Gift with the Foundation. My hope is that this will encourage someone to tell their story, get involved, and let them know they are not alone. I was born 36 years ago in DeKalb, IL, to a loving family with two parents and one older sister.

I was born with an extra digit on each hand that ended up being removed. This was the first sign that I was going to have some
medical intervention in my life. I developed a love for tools and woodworking at an early age and could often be seen with my dad on many house projects, which only enhanced my love for construction, a field I work in now.

Everything changed in fourth grade. My elementary school hosted a planetarium exhibit – an inflated dome filled with projected
stars. As the lights dimmed, my classmates marveled at the stars, but I couldn’t see a thing. I whispered to my mom that I couldn’t see what everyone else saw. That moment marked the beginning of a new chapter in my life.

Concerned, my parents took me to a local retinal specialist, and after visiting several specialists, I was diagnosed with rod-cone dystrophy, which was later confirmed as RP. From then on, annual eye exams became routine.

In my junior year of high school, I participated in vocational classes. This allowed me time in the library, and that led me to find an article in our local paper about a man in our community participating in what was known as VisionWalk. When I read the article, it sparked an interest in me. I obviously knew there were other people who had RP, but it took me by surprise that someone in my own community, whose kids I went to school with, would have the same vision impairment as I did. That stuck with me forever. It turns out that one of our Librarians happened to be then wife of the man in the story, and his name was John Corneille, Director of Legacy Giving at the Foundation Fighting Blindness at that time.

I had the opportunity to meet with John and his family, which led to a strong friendship and admiration to this day. VisionWalk 2007 was my first entry into the Foundation Fighting Blindness. Up until then, I had no idea there was such an organization, as I had only heard about places like the Lighthouse for the Blind. I remember having a kickoff lunch, and just the warmth of people was incredible. I never looked back.

A few years later, another challenge emerged. During a routine checkup, my kidney numbers were high. After consulting a nephrologist, I was diagnosed with kidney disease and eventually went for a complete evaluation. One doctor there began connecting the dots between my RP, kidney disease, and other physical traits, suspecting a rare genetic disorder called Bardet-
Biedl syndrome (BBS). At the time, genetic testing wasn’t advanced enough to confirm it. In 2013, my sister donated one of her kidneys to me, something that I will forever be grateful for.

Fast forward to 2024, during one of my regular eye appointments, my doctor recommended genetic testing to determine which RP gene mutation I had. I submitted my sample through the Foundation’s genetic testing program and anxiously awaited results on the My Retina Tracker® Registry portal. When they arrived, I learned I carried the IFT172 gene mutation linked to BBS. That discovery confirmed what the doctor had suspected years earlier. I returned for additional testing, and my BBS diagnosis was officially confirmed. Understanding the genetic cause behind my RP brought a sense of clarity and empowerment I hadn’t expected. It all came together. In 2025, I was contacted by Gregory Fabiano, who wanted to get in touch with me due to my involvement at the Foundation, specifically for Legacy Giving.

You might be wondering, what is Legacy Giving? While it might sound heavy at first, it’s really about aligning your goals and gifts with the Foundation so your impact continues for generations to come. Given that earlier this year, my dad (who is my hero) had been having issues seeing things and was later diagnosed with macular degeneration, my view on visual impairment is stronger than before. I am sure all who are reading can agree, it is one thing to have the impairment yourself, but to watch a loved one go through it, it makes the Foundation even more vital now than ever.

One of the best decisions I have made was to invest in something that invests in us as the visually impaired, a community both my father and I belong to.

As you can see, I have had quite the journey in my 36 years on this earth, and I am sure God has much more planned for me. They have not come without some bumps and bruises on the way. However, there are some important people who were there along the way to help and guide me through them. Most importantly, my family and the Foundation Fighting Blindness.