PHOENIX, AZ / ACCESS Newswire / March 4, 2025 / In an inspiring story of determination and community spirit, family, friends, and complete strangers have rallied to raise millions of dollars for a groundbreaking clinical trial to help 11-year-old Luke Johnston, who is battling retinitis pigmentosa (RP) caused by Bardet-Biedl Syndrome (BBS). This rare genetic eye condition is threatening his sight, and with the efforts spearheaded by the nonprofit organization A Race Against Blindness, their mission is not only to save Luke's vision but also to advance hope for those affected by similar conditions.
The Johnston Family's Journey of Advocacy
Luke Johnston's parents, Dr. Stephen Johnston and Kristina Johnston, were devastated when their young son was diagnosed with retinitis pigmentosa-a degenerative condition that gradually damages the retina and leads to blindness. However, they refused to be paralyzed by fear. Instead, they turned their pain into purpose by founding A Race Against Blindness, a nonprofit organization dedicated to raising awareness and funding medical research for rare vision disorders.
"This fight isn't just for Luke," said Dr. Johnston, a full-time practicing physician and now also full-time advocate as a nonprofit founder. "It's about paving the way for every child battling retinitis pigmentosa to have a brighter future. We want to give these kids a chance to have a life full of visual experiences."
Retinitis pigmentosa is an inherited condition that often begins in childhood. Over time, the disease causes the gradual breakdown of cells in the retina, leading to night blindness, tunnel vision, and eventually complete loss of sight. For the Johnston family, the diagnosis was both a heartbreaking challenge and a rallying call to action.
Building a Movement Through Creative Fundraising
The family's nonprofit, A Race Against Blindness, has launched a variety of creative and impactful fundraising campaigns. These include high-profile sweepstakes featuring luxury cars, tropical getaways, and exclusive experiences that have drawn the attention of supporters across the United States and Canada. Through the power of these campaigns, the organization has already raised millions of dollars to support cutting-edge research and treatments.
"This mission is about more than money-it's about giving hope to families who have been told there's no cure," said Kristina Johnston. "Every donation brings us one step closer to changing that narrative.
Community Support Powers the Movement
The Johnstons' mission has inspired an outpouring of support from the local Phoenix community and beyond. Schools, small businesses, and individuals have stepped up to organize charity events.
"It's been incredible to see how people have come together for Luke and for this cause," said Kristina Johnston. "The support has been overwhelming and humbling. It shows the power of community when it unites around a common goal."
What makes A Race Against Blindness so effective is its ability to connect with people on a personal level. By sharing their son's story, the Johnstons have built a network of supporters who are deeply invested in the cause. Their transparent communication and heartfelt advocacy have inspired trust and action.
Raising Awareness for Rare Genetic Disorders
Beyond fundraising, A Race Against Blindness is working tirelessly to raise awareness about retinitis pigmentosa and the broader challenges faced by families navigating rare diseases. The organization focuses on educating the public about the emotional, financial, and medical struggles these conditions impose, while also advocating for increased funding and attention from the scientific community.
"Rare diseases like retinitis pigmentosa don't get the recognition or resources they deserve," said Dr. Johnston. "By amplifying Luke's story, we're shining a light on an issue that affects millions of families worldwide. This isn't just about one child-it's about building momentum for change."
One of the key areas the organization advocates for is advancements in gene therapy, a burgeoning field that has the potential to revolutionize the treatment of genetic disorders. Through strategic collaborations with leading researchers, clinicians, and biotech companies, A Race Against Blindness is helping to accelerate progress in this critical area of medicine.
A Call to Action
The Johnstons are inviting others to join their fight against childhood blindness. Whether through donations, volunteer work, or spreading the word, every contribution brings researchers one step closer to a cure.
"We want people to know that they can make a real difference," said Kristina Johnston. "Every child deserves the chance to see their future clearly. Together, we can make that a reality."
To learn more about A Race Against Blindness and how to support its efforts, visit www.ARaceAgainstBlindness.org. The website provides updates on fundraising campaigns, donation opportunities, and progress on the clinical trial.
About A Race Against Blindness
Founded in Phoenix, Arizona, A Race Against Blindness is a nonprofit organization dedicated to advancing research and treatments for genetic vision disorders like retinitis pigmentosa. Inspired by Luke Johnston's diagnosis, the organization has grown into a nationwide movement advocating for hope, awareness, and scientific progress. By allocating their donations to medical research, A Race Against Blindness is transforming lives and reshaping the future for families affected by rare vision disorders.
To learn more visit: https://araceagainstblindness.org
CONTACT:
A Race Against Blindness
Email: Steve@araceagainstblindness.org
SOURCE: A Race Against Blindness
View the original press release on ACCESS Newswire
