“It was nothing short of grueling and terrifying with some of the most beautiful scenery on earth,” Tara said. “It was a testament to the fact that the only limitations we place on ourselves are in our minds.”
For Emmett, making the 22-mile round trip hike was dependent on one thing: his vision. He was diagnosed with Stargardt disease, a genetic form of macular degeneration, at age 12. His older sister Vivian Loyd was also diagnosed with the disease later that same year at age 15.
The family sought care from Amir Hajrasouliha, MD, associate professor of ophthalmology at IU School of Medicine and director of the department’s clinical research program. He presented the opportunity to participate in a clinical trial of ALK-001, a new drug that is a modified form of vitamin A.
“Clinical trials are one of the most important tools in medicine,” said Hajrasouliha. “They help us discover better treatments, develop new therapies and improve quality of life for patients.”
For the Loyd family, the impact is deeply personal.
“Without the trial, my children would both likely be legally blind right now,” Tara said. “This has been life-changing for our family, and I am eternally grateful that we had access to clinical trials and were under amazing care by the clinical trial team at IU, led by Dr. Hajrasouliha.”
A rare diagnosis
Stargardt disease leads to progressive vision loss and currently has no approved treatment. The condition results from a genetic mutation that leads to toxic buildup in the retina’s light-sensing cells, gradually damaging central vision while leaving peripheral sight mostly intact.
“Being told your child is going blind with no options to stop the disease is a hell I cannot put into words,” Tara said.
Even with their diagnoses, the siblings are living their lives to the fullest.
“Emmett first stepped foot on the trail when he was 10 and begged to come back to complete the entire hike someday,” Tara said. “After his diagnosis, I promised him that if his vision allowed, we would do it together before he graduated high school.”
That determination has defined how the Loyd family has approached every challenge since the diagnosis in 2021.
Vivian, 19, is a freshman at DePaul University in Chicago studying biology and dreaming of becoming a veterinarian.
“Despite her vision loss struggles throughout high school, she maintained close to a 4.0 grade point average,” Tara said.
Emmett, now a high school senior, is passionate about cinematography and philosophy.
“Even in the midst of all the challenges, we still love life,” Tara said. “We were even able to get them restricted driver’s licenses because we understand the power of having freedom and independence.”
Climbing toward hope, continued
Currently, more than 24 clinical trials are underway at the IU School of Medicine Department of Ophthalmology. Stories like the Loyds’ serve as a powerful reminder of why clinical research matters. Through participation in trials, families may gain access to emerging treatments that can change the course of disease and restore hope.
“We have strong collaborations with molecular genetics and bioengineering teams,” Hajrasouliha said. “Our large referral network and established patient registry for macular dystrophies ensure efficient recruitment for rare disease studies. The Eugene and Marilyn Glick Eye Institute provides integrated clinical and research facilities, enabling seamless translation of novel therapies into patient care.”He calls the Loyd family’s participation in the clinical trial for Stargardt disease “truly inspiring.”
“Their commitment to advancing research and helping others living with similar conditions exemplifies the spirit of partnership that drives progress in rare disease studies,” Hajrasouliha said. “We are deeply grateful for their dedication and trust in the research process.”
Both Vivian’s and Emmett’s vision have stabilized. They report regained confidence, independence and peace of mind. Hajrasouliha said Alkeus Pharmaceuticals is initiating a global Phase 3 clinical trial of ALK-001, in which its efficacy, safety and tolerability will continue to be evaluated.
“No parent should ever be told that their child will go blind from Stargardt disease ever again,” Tara said. “Clinical trials provide hope, and hope is a powerful thing.”
For the Loyd family, that hope feels a lot like standing at the top of the Kalalau Trail that Tara and Emmett climbed. The path may be steep, but the view makes every step worth it.
Learn more about clinical trials at IU and how to get involved in one.
