Faces Of Our Mission

Scientists in the Institute for Vision Research are committed to developing gene and stem-cell-based therapies for the over 100 genetic forms of inherited retinal degeneration, regardless of how rare or common they are.

For our 2019 Faces of our Mission, we are highlighting Stargardt disease, the most common inherited retinal disease currently known. The Faces of our Mission is a collection of personal stories, written by individuals affected by inherited retinal diseases, to help our supporters experience the human dimension of our mission. Please share these “Faces of our Mission” with as many people as possible. Doing so will help us build awareness of inherited retinal diseases, attract supporters to our cause, and help us ERADICATE THESE DISEASES from the world.

Louie McGee

I am 19 years old and I live with Stargardt disease, a condition that limits my central vision. Shortly after I was diagnosed at age 5, my family and I found our way to Dr. Stone and the team at the University of Iowa. I have been lucky enough to have a great support system from the medical team in Iowa, my schools, my family and my friends. When I was 16, I started my own nonprofit, Louie’s Vision (www.louiesvision.com). By focusing on possibility rather than disability, we strive to provide visually impaired youth with opportunities to expand their life experiences and empower them to reach their fullest potential. We do this by focusing on awareness, confidence and accessibility. Through connections in the blind community, last summer I was lucky to participate in a leadership and adventure trip to the Grand Canyon. There were kids with blindness and fully sighted kids - all high school age. We hiked, climbed, and rafted in places that would have given my parents heart attacks - exploring 270 miles of the canyon. Additionally, last year I decided to train to complete the full Ironman. I saw the challenge of a 2.4 mile swim, 112 mile bike ride and a full marathon as a great platform to use to talk to other kids with blindness to find their own adventure. I completed the race with my guide in October. I have been fortunate to use the Ironman as the basis for sharing my story of possibility with so many through multiple speaking engagements over the past several months – including a TED talk with TEDx Minneapolis this summer. It is important to me to build strong networks for others just like the one I was fortunate enough to grow up in. I will continue to challenge myself to find ways to connect with kids and families dealing with blindness. This fall, I will head to the University of Minnesota ready to experience the intensity of college and the freedom of dorm living. I will study Psychology and go on to Law School. As for satisfying my need for adventure, I had such a powerful experience in the Grand Canyon and fell in love with the Colorado river that I plan to go back and kayak all 270 miles of white water at some point the next ten years.

As the IVR doctors and scientists search for a cure for blindness, I continue to move forward exploring what's possible and helping other kids like me get the most out of life. This dream is about empowering the blind community and making the most of what we have. After all, blindness is not as simple as black or light – and doing great things is never simple.



My name is Josh, and I was diagnosed with Stargardt Disease when I was nine years old. For the first few years, I primarily used a CCTV to enlarge print on books and worksheets, and to magnify anything written on a whiteboard or projected on a screen in classrooms. In high school and college, though, I transitioned to using my iPad and MacBook for many of these tasks, although I still use my CCTV for exams and some other assignments. I have also been fortunate enough to have amazing friends and family members who help me with something even if I don’t ask for it.

I grew up in Marion, Iowa, and attended Linn-Mar High School. I spent a lot of time tutoring math and English, participating in various leadership and service groups, and I attended my Catholic parish’s weekly youth group. I also ran cross country, served as team manager for my school’s tennis team, and played a lot of basketball. Aside from extracurriculars, I enjoyed watching sports (especially football) on weekends, biking, and spending time with my friends.

I currently attend the University of Notre Dame in South Bend, Indiana. I am majoring in business analytics and statistics, and I hope to pursue a career in logistics and supply chain management. At college, when I’m not studying, I spend my time tutoring at a local elementary school, working as an ND Ambassador with alumni outreach, and participating in other clubs ranging from service work to disability awareness. I love meeting new people, attending sporting events (especially the football games), and enjoying memorable experiences.



My name is Jamison. I am 20 years old and have been visually impaired for about half of my life. I have the “cone rod dystrophy” form of Stargardt disease, which makes me highly light sensitive. It requires that I wear sunglasses outside most of the time but I don’t mind that at all. At this point, it’s just part of my look. I am a math major at Marian University with the intent to do graduate studies in math. For the last 4 years I have loved mathematics and physics. It is both my hobby and my area of study. Other than studying natural sciences, I enjoy painting, reading, studying Russian, and 3D design.

This summer I will have the amazing opportunity to teach sixth grade math and English in a summer program with a local school called La Plaza. I have often tutored students in math but this will be my first time officially teaching and I cannot wait! After my undergraduate studies, I hope to enroll in graduate school and attain a doctorate in mathematics.



My name is Conor and I am 18 years old from Davenport, Iowa. I first developed the signs of Stargardt Disease in the 4th grade at the age of 10. At that time, it just seemed like a slight vision issue that wouldn’t affect my life too much. I wasn’t sure what to expect.

Stargardt Disease affects my central vision which makes me have to rely on my peripheral vision. I quickly adapted to this because I wanted to keep enjoying the same things as I had been doing. I was very active in basketball and baseball at the time and I liked to participate on the team, have fun with friends, be reckless, and enjoy life!

As the disease progressed, I stopped playing basketball competitively in junior high, but continued to play baseball. It was difficult to see at times depending on the lighting in the sky or the background of the trees and buildings, but my will to play came through. I was one of the starting pitchers and played some third base. I had great coaches who knew of my vision issues, and they worked with me so I could continue to play the sport I love and be safe. At times it was hard with teammates and fans grumbling if I made an error, but they need to realize that even kids with great vision make errors. I tried to be a leader and show the younger kids that teamwork and understanding are the qualities that mean the most. My most cherished moment of baseball was on June 8, 2016 when I hit a walk-off homerun to win the game for my team. My mother got it on video and every time I watch it, I feel the excitement of the night.

My degeneration leveled off around the age of 14 and I was learning to not let my disease be an excuse and still live a normal life as best I could. Socially, through junior high and high school, it was difficult. I wasn’t able to see far away so it was hard to see if my friends were at a certain lunch table or sitting in the bleachers. I learned to listen and just start going forward to where I wanted to be. I had some great friends that would call to me so I could hang out with them. Being confident and holding my head up allowed me to engage others as best I could.

I’m lucky that academics were fairly easy for me, but again, there were many struggles and adaptations I had to deal with. I had wonderful teachers that helped me in any way possible. They would provide me with written notes from the board and made sure I received assignments electronically. If something was written on the board, I would look at it before I sat down. Sometimes I would get an answer wrong because I went too fast on a test and missed a small word or number that made a big difference in the answer. My electronic magnifier and my iPhone were crucial for me to read and finish assignments accurately. I was able to perform at my top capability in high school and I graduated in June 2019 with a 4.0 GPA.

I was also able to play one year of baseball at a high school level before I quit due to safety concerns for myself. I decided to start bowling and have thoroughly enjoyed it. I bowled all through high school and was on the varsity team. Even though I can’t see the arrows, I can get a good feel of the lane. I plan to continue bowling in the future and maybe start a club in college. Also in high school, I participated in golf, weightlifting, and National Honor Society. NHS made me realize that helping the community is very rewarding. My educational journey is still not finished, because I am going to Bradley University this fall to pursue my doctorate in Physical Therapy.

With the help of my parents, my sister, teachers, counselors, and doctors at the Institute of Vision Research at the University of Iowa, I have come a long way since the age of 10. I will continue to live each day and figure out how to make the best of things, have fun, learn new skills, and find a rewarding career. I know that a cure is coming, but I need to live my life now and can’t wait for my next chapter to begin.



My name is Lindsey, and I am a Physical Therapist Assistant (PTA). I graduated with my Physical Therapy Assistant degree along with my Bachelor’s degree in Health. Currently, I am working at a university in the Accessibility Resource Center helping individuals with disabilities reach their educational and vocational goals. My faith, family, and friends are all very important to me. I enjoy being outdoors, running, and playing with my adorable niece and amazing nephew. My hobbies include crocheting, reading, rooting for the Royals, and attempting to hold entire conversations with my brother using only quotes from Star Wars.

We choose some of the paths we take in life and other paths are chosen for us. I began to lose my central vision in the fifth grade. I had trouble seeing the chalkboard and reading my textbooks. The path in front of me grew dim. My parents searched for answers with unwavering determination and took me to countless ophthalmologists. We had no answers as to what was wrong until my family and I drove to see Dr. Stone at the University of Iowa. He diagnosed me with Stargardt Disease. Beyond giving me a diagnosis, he gave my family and I hope that a cure for Stargardt, and diseases like it, was possible.

Several years later, I had a rapid loss of vision in my right eye. Dr. Stone found that I had developed an aggressive layer of scar tissue on the surface of my retina and Dr. Boldt performed an extraordinary surgery the next morning to remove this tissue that was detaching my retina. Without this surgery, I would have lost all vision in that eye. Because of the knowledge and expertise of both Dr. Stone and Dr. Boldt, my vision was restored to what it was before the membrane had developed.

I consider myself blessed. I am blessed to know Dr. Stone and his outstanding team. I am blessed with a loving and supportive family who make walking this path easier. And, I am blessed to live in a time when technology allows people with vision loss to live independently. Assistive technology makes all the difference in my world without central vision. ZoomText Mag/Reader helps me with my daily tasks on my work computer. The built-in accessibility features on the iPhone work great. I use VoiceOver to do everything on the iPhone, like checking emails and reading books on the go. My favorite accessibility apps for the iPhone, right now, are Seeing A I and FlickType.

It has now been decades since I first sat in an exam chair across from Dr. Stone, and I am amazed by all the advancements made in research since then. I am grateful to Dr. Stone and the IVR for their unparalleled and relentless dedication to a mission that brings so much hope to families living with the daily challenges of retinal disease. Though the physical path in front of me remains unclear, Dr. Stone and his team inspire me to keep moving forward because I know they are also moving steadily forward towards cures for Stargardt disease and many other forms of inherited blindness.



My name is Donna Prime, I live in Iowa City, Iowa and have lived in Iowa off and on since 1976. I attended high school in Cedar Rapids and college in Cedar Rapids and Des Moines at Drake University. I have worked at the Iowa City VA Healthcare System for 28 years and currently work in the VA Transplant Center as the Program Manager, Administrative Assistant.

I have an older sister who started having eye problems when she was a toddler, but it went undiagnosed until she was 6-years-old. When I started having eye problems at the age of 12 it was suspected we might be dealing with something that was hereditary. My father was in the United States Air Force, so we saw many doctors about our eye disease including some Ophthalmologists in Japan who wanted to do laser surgery on my optic nerve in hopes of stopping the disease from progressing, but my parents being level headed and not too keen on their daughter being used as an instrument for experimentation, politely thanked them but declined. It wasn't until I was 15 years old and we were living in Omaha Nebraska where my father was stationed at Offutt Airforce Base where we saw an Ophthalmologist who diagnosed me and my sister with Stargardt's macular degeneration. He was familiar with how the disease effected the retina but also informed us that there was nothing that could be done to repair the damaged cells. From that point life went on, I completed school, I traveled and I had various jobs. I use assistive devices in my job and at home. I have taken blind training through the Iowa Department for the Blind and the National Federation of the Blind. I have become an advocate for the rights of blind people through my work with the NFB.

My association with the Institute of Visual Research began when I became a patient of Dr. Edwin Stone. Imagine my surprise when during one of my appointments he announced that he was going to be doing research to identify the gene that caused my eye disease. The next thing I knew my entire family were all signed up to provide blood samples to be used in a genetic study, it was great. Up to this point my family hadn't had a common cause to rally around for some time and they were happy to participate.

Dr. Stone asked me if my sight could be restored to some point what would be the one thing I would want to do that I couldn't do now. I told him I want to be able sit up and read a book without having to use assistive devices or hold the book so close to my face it hurt. One of my fondest memories as a child before the Stargardt's, is being able to go to the Library, check out a book, sit down and read.



My name is Sujit and I am from Edina, MN. I am 18 years old and was diagnosed with Stargardt disease at 13. Music has always been a large part of my life. I have been playing piano for the past 10 years. I also play the tenor saxophone in several advanced high school bands including Jazz and Concert bands. I was selected to represent my high school at the Minnesota Music Educators Association’s (MMEA) All-State Symphonic Band. I am a National Merit Commended Scholar and AP Scholar with Distinction. I received the President's Award for Educational Excellence. I was admitted to the University of Minnesota Twin Cities PSEO program. I received the Bev Poncius Outstanding Band Member award from the Edina High School (EHS) Band and was honored to be inducted into the EHS Band Hall of Fame.

In my free time I enjoy playing video games with my friends and watching movies, TV shows, and anime.

This Fall (2019) I am attending the University of Illinois at Urbana-Champaign to major in Computer Science. I am passionate to develop software and technological solutions for the blind and vision impaired with the long term goal of technology entrepreneurship. Although Stargardt disease has placed barriers in my path, I believe that with the right attitude and support one can achieve one’s goals.


Johnston Family

We are the Johnston family. Four of us have been diagnosed with Stargardt disease (at very different ages).


Tom: I am the oldest of three children. At age 10, I had the earliest onset of Stargardt disease. My parents worked hard to find me all the resources I would need to not let my vision loss slow me down. At an early age I was always interested in how things worked, taking things apart and putting them back together. It was this interest that lead into one of my hobbies of restoring vehicles, motorcycles and equipment. I enjoy the outdoors; including traveling, camping, hiking, scuba diving and days on the lake. I enjoyed many adventures through the Boy Scouts and achieved the rank of Eagle Scout. I attended the University of Texas at Austin, finishing my degree at University of Texas at Dallas. I have worked in municipal government for the past 31 years and am currently the Director of Administrative Services for the City of Frisco. Our visits with Dr. Stone have been very informative and inspiring. I remember 40+ years ago, sitting in a retina specialist’s office and hearing that “nothing can be done to improve your vision.” Now, with the research being done, there is hope!


David: I also have Stargardt disease. I lost my vision at age thirteen and now I am approaching fifty-one years old. I am an avid scuba diver, skydiver, and outdoor sportsman. I have tried to not let vision loss affect my outlook on life. My three children and I enjoy our adventures together. I currently own and operate a construction company in the Dallas, Texas area. I earned a bachelor’s degree from the University of Texas at Dallas in law/criminal justice. I decided not to go on to law school, and instead pursued my dream of designing and building outdoor living spaces.
I am the second member of our family to be diagnosed with juvenile macular degeneration, later to be recognized as Stargardt. I had guidance and support from my family. Later finding out my younger sister and mother would be affected; we have always had our own family support group to help. Traveling as a family to Iowa for promising news on possible treatments from the Institute for Vision Research at the University of Iowa has given hope to all of us. If just one of us could benefit from treatment, it would mean the world to me. I always look forward to seeing Dr. Stone and his staff during our follow up visits.


Dianne: When I was 15 years old I became the third member of my family to be affected with Stargardt disease. Being the third was not so bad because my brothers paved the way for me in my education. There was already a vision teacher in place who knew my family well. The regular teachers knew that my mom was an advocate for us and our needs. My father pushed for a very strong work ethic. At the time of my diagnosis, I was inspired by art. My art teachers encouraged me to work on larger canvases and to never give up. I received a degree in special education because I knew that was a field in which I could be hired. I have been an art teacher in a private school in South Texas for the last 13 years. I am living my dream of teaching art and helping children to express themselves. I teach drawing, painting and sculpture and I’m not afraid of slime. I work with elementary level students who are very excepting and are unaware of any limitations I might have. My brothers and I have encouraged each other through the years when the world can be cruel and ignorant. My mother developed Stargardt much later in life and became the fourth member of our family to develop this eye disease. She has been able to cope and has received a service dog to help her on this journey. Clutch is an important member of our family. Whenever we have visited Dr. Stone he has provided great hope for us. We appreciate his language especially when he says, ”dot dot dot”. I’m sure this comes from his dictation style of speaking but to us it’s so much more. The dots represent the future of vision and the hope for tomorrow. I try to use the three dots in all my texts to remind me of Dr. Stone and his search for a new vision.


Mary Ann: I’m 72 years old. When my husband Bob and I took our children to Texas Retina Associates, I was told that I also had Stargardt disease. At this time, I was in my thirties, but it hadn’t affected my central vision at this point. I was blessed to have correctable vision until my late fifties. I retired in 2005 after having worked as Circulation Supervisor at our local library. I have always been an avid reader. Today I’m still an avid reader, only now it is with audio books. My children have always been my heroes. They inspire me to find a new way to adapt. In 2012, we visited the University of Iowa Eye Clinic and met Dr. Stone. This mystery we had been trying to understand was explained to us. Thank you Dr. Stone. We now have hope in the future with our kind and compassionate friends at the University of Iowa Eye Clinic! In 2018, I received a guide dog named ‘Clutch’ from the KSDS Assistance Dogs, Inc. in Washington, KS. He is a best friend and a great help when navigating new places



Anna was diagnosed with Stargardt disease the summer after her freshman year at Macalester College. After getting some strong reading glasses, she went on to graduate with departmental honors in English, and is currently an MFA candidate at Sarah Lawrence College. In her writing, Anna seeks to demonstrate the way her world has changed, and continues to transform, through a degenerated eye. With the help of her trusty pup Franklin, who is now a trained service animal, Anna is thriving in New York, and works as an SAT tutor. She tries to make the most of her diagnosis, always getting snazzy glasses and turning her trips to the Iowa City clinic into fun adventures with her mother Jean. Anna is looking forward to the day that her eyes can be healed, and when they are, she is taking her oldest niece Sadie Jean on a road trip!


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