Faces Of Our Mission

Michael Luepke

Mike grew up in Lafayette Indiana, and had a great high school experience including theater and sports. It was not until after he finished college at Purdue that his vision begin to fail, and he was clinically diagnosed with Stargardt disease. He later moved to Holland, Michigan and sought treatment at a number of different clinics and institutions, before being introduced to Brian Walker and the Institute for Vision Research through his fitness business.

A lifelong athlete and a fitness coach for nearly 2 decades, Mike loves building community and empowering athletes of all shapes and sizes to look, move and feel better. His life is rich with faith and family, and he continues to learn and grow through the use of audiobooks and adaptive technologies. Though he has many passions and interests, Mike’s greatest joy is his two young boys, Cruz and Hunter and his beautiful bride, Jessica, with whom he operates Valeo/ Training.

Mike is excited to work with the amazing team at the IVR, and is eagerly anticipating the inevitable cures for hereditary blindness!

 


Jack Deal

I am 18 years old and live in Savannah, Georgia. I have Retinitis Pigmentosa which reduces my vision in dim light and reduces my peripheral vision a bit. I currently attend Georgia Southern University and will be attending Georgia State University in the fall. I plan to transfer to Georgia Tech the following year. Later this month, I will be moving up to Atlanta to live up with my middle brother Alex. I enjoy watching baseball constantly, either on television or, my favorite, going to the ballpark. My goal is to visit every single major league baseball park in the country. My high school graduation trip involved eight games in ten days in five different cities. We also mixed in a couple of days at Cedar Point and believe I could spend my entire life on a rollercoaster.

I love watching college football and I have also started to follow soccer where my favorite team is Atlanta United. Some of my fondest memories growing up are the many trips down to Disney World to ride the rides and then go see Braves spring training games. Next week, Dad and I will be playing, and my family will be attending, the Sam’s Scramble for Sight golf event benefiting the Institute for Vision Research.

 


Peterson Family

Todd and Amber Peterson have four children. The older three have reduced central vision due to Stargardt disease. They write: “The work that the Institute for Vision Research is doing gives us hope that life changing conditions like Stargardt disease will be cured in the not-too-distant future. Taylor (24), Brooklyn (18), and James (16) have all adapted well to living with Stargardt disease, but they look forward to the day that they are able to see better and perhaps even be able to do things that others take for granted like driving a car. Taylor graduated from ISU with a degree in Agricultural Systems Technology and is currently working in Cedar Rapids at Junge Control as a Mechanical Designer. Brooklyn graduated from high school this spring and will be attending Kirkwood College this fall. Brooklyn plans to pursue a career as a Dietitian. James will be a sophomore in high school and is looking forward to playing football this fall and soccer in the spring. Their younger brother Cash (10) has good vision and often serves as the "eyes" for his older siblings. Cash is very aware of his siblings’ condition and has learned without prompting how to narrate what he sees.

 


Dannielle

My name is Dannielle Schutz and I have Stargardt disease. I am legally blind, but I try not to let it define me. I am a junior in high school and a member of the golf team, cheerleading squad, marching band, National Honor Society, Students of Service, 4-H and FFA (where I show goats). I have been on the honor roll throughout high school. Having a visual impairment has not kept me from doing all the things that I love to do.

Danni’s parents add:
“Ever since Danni started losing her vision in 1st grade, we have tried to treat her as if she were just like her siblings. She has had chores and expectations just like they do and has learned over the years what works best for her. We believe that this is part of what has helped her to continue to push herself to do more and to never let anything stop her from achieving her goals. She also has a great group of friends that she has grown up with that have always been there for her and treat her just like everyone else.”

 


Madeline

Madeline is 11 years old and beginning sixth grade this fall. She is excited to start middle school. She enjoys dance (ballet, tap, jazz, and lyrical), soccer, choir and playing the piano. Her favorite activity is hanging out with her friends. Her favorite subject in school is science, especially anything to do with weather. She recently got her first pet, a parakeet named Sky. Madeline has Stargardt disease, which reduces the clarity of her central vision.

Madeline’s mom writes: “When Madeline was diagnosed with Stargardt disease in early 2016, her dad and I were overwhelmed with worry. Since she began seeing Dr. Stone, Dr. Wilkinson, and the rest of the staff at the University of Iowa, that worry has largely been replaced with relief, comfort, and hope. Relief that she is receiving excellent care, comfort that we have been taught ways to help her and hope that research done at the University of Iowa and elsewhere, will eventually stop and reverse her retinal damage. We are extraordinarily grateful that Madeline’s vision care team has allowed us to recognize that our daughter’s disease is just one part of her full life.”

 


Howard Ruby

Howard Ruby is the namesake of the Howard F. Ruby Retinal Engineering Facility in the Institute for Vision Research at the University of Iowa. He was not able to participate in RAGBRAI this year because he is actively training for a rowing regatta in a marina near his home in Beverly Hills, California. However, these photos show that he is with us in spirit, proudly wearing his IVR bicycle jersey during his regatta practice. While his rowing partner is in Europe, Howard has been learning how to use the competition single scull which is only 10.5” wide and 26’ long. It has no keel, and is “tippy as all get out”. That is why he has been using the extra stabilizing pontoons for this week’s solo practice. He’ll take them off by the end of the week.

Howard has a condition known as Retinitis Pigmentosa (RP) which has progressively and severely affected his vision. Howard rows with a walkie talkie that allows someone to guide him from a chase boat. Although there are 170,000 active rowers in the US at this time, the number rowing with low to no vision are barely enough to fill an 8-man boat!

 


Kristen Steele

I'm Kristen Steele, and I will soon be celebrating my 21st birthday. At only six months old, I was diagnosed with Leber Congenital Amaurosis (LCA). Much later, mutations in the CEP290 gene were found to be the cause of my profound vision loss. I received my first guide dog from KSDS, Inc. at age 16, a Golden Retriever named Corvette from the fast-car litter. "Cory" has been by my side for the last five years; he helps me navigate through life with more confidence and freedom than I ever thought imaginable. I work as a licensed massage therapist, specializing in geriatric care, at Synergy Advanced Massage Therapy, LLC in Ralston, NE. In my spare time, I enjoy going for a daily walk, tandem-biking through Outlook Nebraska, shopping (especially at Jordan Creek), reading anything with a tearjerker twist, and spending time with family and friends. I also have a passion for all things Braille, compelling me to advocate for blind professionals pursuing massage therapy or related fields (see link below). The generous, everlasting support of the ophthalmology specialists at University of Iowa Hospitals and Clinics inspire me with courage to persevere and hope for a brighter future without barriers. Their dedication and selflessness to those affected by rare inherited retinal diseases cannot be measured. I thank them for continuing to push forward to give people like me a chance at a better view of the world around us!

You can listen to a podcast about Kristen and her advocacy for visually impaired people by clicking on this link:

https://blindabilities.com/bapresents/meet-kristen-steele-advocate-massa...

 


Cory and Joanie

Cory and Joanie have a condition known as Usher Syndrome caused by mutations in the USH1C gene. Usher Syndrome is a combination of retinitis pigmentosa and congenital hearing loss. Although the cochlear implants they received as very young children allowed their speech to develop normally, their hearing is not completely normal. Cory has written a song about his hearing impairment which he recently performed publicly with a high school classmate. You can watch a performance of this song on YouTube by clicking here.

As I watched this performance, I thought “Wow, this AND a retina problem!”

Joanie is also very artistic and wants to be a film director. When I asked her how Usher Syndrome affected her she said:

“When I found out that I was losing my vision, I was more than a little freaked out. As my sight gets narrower and narrower, it becomes harder and harder for me to navigate my surroundings. I was pretty scared of what the future held for me. How could I pursue my dream of being a film director when vision is such an important part of that job? But the research being done in Iowa has given me hope, and I can’t thank everyone who has supported that research enough for that.”

 


Louie McGee

I am 18 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. I recently 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 our events, speaking engagements, website, Facebook, and Instagram, we are building a strong and hopeful network. As the Founder and Leader of Louie’s Vision, it is important to me to build strong networks for others just like the one I was fortunate enough to grow up in. As I look ahead, I am full of hope for the future – in my final year at Cretin-Derham Hall and into college. I love skiing, running, and being on the swim team, and will continue with those sports. I am currently training for the IronMan this fall in Louisville, KY. I will use this experience as a platform to speak and show others with blindness that so much is possible.

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.

 


Logan and Zoe

Logan is a happy, outgoing and smart seven year old. He is in the gifted and talented program at his school and will be starting second grade this year. Since the moment he met his first toy vehicle, he has loved cars, trucks and buses. He was also introduced to hockey about a year ago through a blind hockey event and has played ever since.

Zoe is a vibrant 5 year old girl who will be starting kindergarten this year. Any free moment she has she is either doing arts and crafts or trying to do anything her brother is doing. She also enjoys soccer and dance.

Logan and Zoe have a congenital retinal disorder known as Severe Early Childhood Onset Retinal Dystrophy (SECORD) caused by mutations in a gene known as RDH12. This condition affects both types of photoreceptors (rods and cones) so that central acuity, peripheral vision and night vision are all impaired. Fewer than 15 children per year are born with RDH12-associated SECORD in the United States.

When I asked Logan and Zoe’s parents how SECORD was impacting their family, they said:
This rare disease is what comes between my children and the world. It limits them. “Rare” has flipped our world upside down and forever changed us. We know our love is what keeps us going on the days that feel impossible. We never ever give up on our children, and we will never stop fighting for their well-being. All we want is for our children to not have to fight so hard to simply be.

 


Makenzie and Amelia

Makenzie and Amelia are twins. Makenzie is an animal lover and wants to be a vet when she grows up. She loves dressing up in a vet costume and taking care of her stuffed animals. The other day she was making a list of all the animals she wants to take care of when she grows up. She has a wealth of knowledge when it comes to animal facts. She also loves to read!

Amelia loves monkeys and dresses up as Jane Goodall on a weekly basis. Her plan is to move to London and live with Jane Goodall and the Chimpanzees when she grows up. She loves art, board games and reading just like her sister. She also has a blue belt in Martial Arts!

 

Makenzie and Amanda both have Batten disease, caused by mutations in the CLN3 gene. Batten disease is arguably the most serious disorder we study in the IVR and is more rapidly progressive than most inherited retinal conditions. As a result, we have prioritized it in our therapeutic development program.

 


Sam Walker

Sam Walker is 25 years old and lives in Grand Rapids, MI.  He works for Ernst & Young LLP as an Auditor. He graduated from Michigan State University in 2016 with his Masters of Science in Accounting. Most of his free time is spent on a golf course or on a boat. Sam is also a die hard Michigan State Football and Basketball fan and has not missed a home football game in 7 years.

Sam has a condition known as Retinitis Pigmentosa (RP) which limits his peripheral vision and his vision in dim light.  There are more than 80 different genes that cause RP and Sam’s gene TRNT1 is one of the rarest.  In fact, when Sam was first seen at the University of Iowa at age 18, TRNT1 was not yet known to cause RP.  The Howard Hughes Medical Institute made a short movie about the discovery of Sam’s gene which you can view by clicking here.

 

Sam and his family host a fundraising golf tournament in western Michigan each year (Sam’s Scramble for Sight) which has raised nearly 3 million dollars for vision research.  You can read more about that event at:

https://scrambleforsight.com

 


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