Angela Ricketts Shares Her Family’s Choroideremia Journey in New Book, Never Lose Sight

St. Louis author and Sight Stones founder highlights hope, resilience, and purpose following her son’s diagnosis with a rare inherited retinal disease.

SPRINGFIELD, MA, UNITED STATES, August 28, 2026 /EINPresswire.com/ — The Choroideremia Research Foundation (CRF) is proud to celebrate the upcoming release of Never Lose Sight: Finding My Way Back to Hope Through Vision Loss, Grief, and Clay, a new book by Angela Ricketts, founder of Sight Stones and mother of Kai, who lives with choroideremia (CHM), a rare inherited retinal disease that causes progressive vision loss.

Releasing August 28, 2026, Never Lose Sight shares Angela’s family’s journey through unexpected loss, uncertainty, and hope following Kai’s diagnosis. Through heartfelt storytelling and personal reflection, Ricketts explores how life’s most difficult moments can become opportunities to discover resilience, purpose, and a deeper appreciation for what matters most.

“In 2016, my five-year-old son was diagnosed with a rare eye disease that leads to blindness—the same that took my grandfather’s sight,” Ricketts shares. “I didn’t write Never Lose Sight because I had all the answers. I wrote it because I discovered that hope isn’t found in having an easy life—it’s found in choosing what we focus on.”

After Kai’s diagnosis, Angela began searching not only for answers and potential treatments, but also for a way to process the fear and uncertainty that came with her family’s journey. As an artist, she turned to creativity and began crafting small clay reminders to hold onto hope and never lose sight of what matters most.

Each Sight Stone features a hole in the center, representing the visual field of someone living with choroideremia and offering a tangible reminder of the experiences and perspectives of those affected by vision loss. The stones can be held as touchstones or transformed into necklaces and bracelets, carrying their message of hope wherever they go.

The creation of Sight Stones also reflects a generational connection to art and storytelling. Angela’s father was an artist, and through her own creative work, she found a way to transform fear and uncertainty into something meaningful that could connect with others. What began as a personal way to cope became Sight Stones, a nonprofit organization dedicated to supporting research for inherited retinal diseases.

“Angela’s story reflects the resilience and determination found throughout the choroideremia community,” said Kathi Wagner, Executive Director of the Choroideremia Research Foundation. “Families affected by CHM navigate uncertainty while continuing to advocate for research, support one another, and find hope along the way. We are grateful to Angela for sharing her story and helping raise awareness of choroideremia.”

Throughout Never Lose Sight, Angela shares how her family’s experience with CHM shaped their understanding of courage, vulnerability, and connection. In the book’s epilogue, she reflects on the perspective her son has given her throughout their journey: “Kai taught me that you can carry something terrifying in your body and still look the world in the eye. He taught me that vulnerability isn’t weakness—that saying, ‘It’s my story, Mom. Share it,’ takes more courage than most people find in a lifetime.”

Choroideremia is a rare genetic condition caused by mutations in the CHM gene. The disease primarily affects males and causes progressive vision loss, often beginning with difficulty seeing in low light and loss of peripheral vision before advancing to significant visual impairment. While there is currently no approved treatment or cure, researchers around the world are actively working to better understand CHM and develop potential therapies.

Through Never Lose Sight and Sight Stones, Angela hopes to remind others facing difficult seasons that they are not alone. All proceeds from the book support Sight Stones’ efforts to fund research for inherited retinal diseases.

More than a memoir, Never Lose Sight is a message about transforming hardship into purpose. Through stories of grief, family, faith, and resilience, Ricketts invites readers to consider what they choose to focus on when life does not go according to plan.

“Whatever you’re facing—whether it’s vision loss or losing sight of what matters—you don’t have to face it alone.”

Through Never Lose Sight and Sight Stones, Angela Ricketts continues to share a message of hope while raising awareness of inherited retinal diseases like choroideremia. The Choroideremia Research Foundation is committed to funding research, supporting families affected by CHM, and advancing education and awareness efforts around this rare condition.

Discover Never Lose Sight on Amazon and learn more about Sight Stones at sightstones.org.

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About Choroideremia:
Choroideremia (CHM) is a rare inherited form of blindness affecting approximately 1 in 50,000 people. Due to its X-linked inheritance pattern, males are most severely affected, with females usually experiencing much milder visual impairment. Symptoms begin in early childhood, with night blindness and restriction of visual field being the earliest noticeable effects, eventually progressing to complete blindness. An estimated 6,000 people in the United States and 10,000 in the European Union are impacted by choroideremia. There are currently no approved treatments for choroideremia. For more information, visit curechm.org/about-chm/

About the Choroideremia Research Foundation Inc.:
The Choroideremia Research Foundation was founded in 2000 as an international fundraising and patient advocacy organization to stimulate research on CHM. Since its inception, the CRF has provided approximately $6 million in research awards and is the largest financial supporter of CHM research worldwide. Research funded by the CRF has led to the development of a CHM animal model, the pre-clinical production of gene therapy vectors currently in clinical trials, and the CRF Biobank which stores tissue and stem cell samples donated by CHM patients. For more information, or to make a donation to support research, visit curechm.org

Reagan Devinney
Choroideremia Research Foundation Inc
+1 800-210-0233
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