By Kristen Mulvihill
Scheie Vision Annual Report 2020
Tracy Minish was in high school when he was diagnosed with retinitis pigmentosa (RP), a rare, inherited eye disease that causes severe visual impairment. This disease has attacked Tracy’s family for generations, with his son Carson now the fifth generation of his family to receive the diagnosis. Now, at age 65, Tracy has less than five degrees of his field of vision remaining.
Often diagnosed in childhood or adolescence, RP is a group of rare, genetic disorders involving the breakdown and loss of cells in the retina. The disease changes how the retina responds to light, causing a gradual loss of vision.
Despite growing up with this blinding condition, Tracy participated in football, wrestling, and track, discovering creative mechanisms to assist with navigation. “A teammate would allow me to hold onto their jersey to get into the stadium, and I would use a towel as a tether to move around with friends at night,” he recalled. To date, Tracy has completed 31 marathons with the help of a guide, including the Boston, New York, and Chicago Marathons.
After graduating from the University of Georgia with a degree in Computer Science, Tracy was recruited by NASA’s Johnson Space Center, where he has remained for over 36 years. He currently serves as the Mission Control Center Operations Manager and helps to oversee space ventures, review upcoming mission events, and supervise training simulations and test activities. To create a setting in which Tracy can succeed and prosper, NASA provides him with the assistive technologies required to perform his duties.
“With the tools I have at NASA, I can manage emails, review and redline documents, create presentations, and chair meetings as well and as independently as a sighted person,” he explained.
In addition to his impressive career at NASA, Tracy visits schools and organizations to advocate for individuals with disabilities. He previously served as the chair of the No Boundaries (NoBo) Employee Resource Group at NASA, a program geared towards supporting individuals with disabilities. “I am passionate about reaching out to our youth with disabilities and letting them know their dreams can be made a reality,” said Tracy. “It is our responsibility to ensure they have access to tools, training, education, and encouragement to help them reach their goals.”
In 2016, Tracy and his wife Sherry were flipping through channels on the television when they stumbled across a program about the challenge to end blindness by 2020. Several researchers, including Jean Bennett, MD, PhD, F.M. Kirby Professor of Ophthalmology, were featured.
Dr. Bennett has devoted her career at the University of Pennsylvania (UPenn) to finding a cure for patients with inherited retinal degenerations. In 2017, Dr. Bennett, Albert Maguire, MD, Professor of Ophthalmology at UPenn, and their collaborators received landmark FDA approval for the first gene therapy to target an inherited disease. The therapy significantly improves vision for patients with mutations in the RPE65 gene, which is associated with RP. This year, Drs. Bennett and Maguire received the inaugural Sanford and Susan Greenberg 20/20 Prize to End Blindness, awarded to individuals with the greatest contribution to ending blindness by 2020.
The TV program sparked months of deliberation for Tracy, who finally decided to undergo DNA testing in 2017. At first, he was dissuaded by his local retina specialist in Houston, who told Tracy that DNA testing was too expensive and there wouldn’t be a cure for RP in his lifetime. With his son and future grandchildren in mind, Tracy sent an email to Dr. Bennett sharing his family’s battle with RP. Dr. Bennett responded the very next day. “My wife and I teared up as we read her email,” he said.
Tracy and Carson provided DNA samples and later flew to Philadelphia to meet with Dr. Bennett and her team at UPenn. Dr. Bennett isolated Tracy’s specific mutation, discovering that he has RP with mutations in the PRPF31 gene. Tracy now urges individuals with hereditary diseases to have their DNA tested and remains optimistic that current research will lead to a cure.
“Dr. Bennett has cured one form of RP, and her passion and tenacity to push the research forward until all genetic diseases are eradicated makes her a hero to my family and to all families who have loved ones with vision loss,” he said.
Tracy hopes to return to Penn for human trials for PRPF31, and to visit Dr. Bennett, her research team, and her family. “There is great hope for all people battling blindness because of the research Dr. Bennett and others like her are performing today,” said Tracy. “Curing blindness was once something I could only read about in my Bible, but Dr. Bennett and others like her are true miracle workers.”