Save Sight Now: Turning a Family’s Journey into Hope for Usher Syndrome Research with Rosalyn Porcano (Episode #170)

In this inspiring episode of Vision Beyond Sight, Dr. Lynn Hellerstein talks with Rosalyn Porcano, co-founder and Chief Development Officer of the Save Sight Now Foundation, mother, and rare-disease advocate. After her daughter was diagnosed with Usher syndrome type 1B (USH1B), Rosalyn and her husband, Justin, turned their family’s challenges into a mission to accelerate Usher syndrome studies and research. Discover their journey, the promising progress toward treatments, and how you can help bring hope to thousands of families affected by this rare disease. Check out www.savesightnow.org to make a donation or join the Save Sight Now’s 7th Gift of Vision Gala on November 5, 2026, in Mill Valley, California.

🔊 CLICK HERE and tune in to the show now to explore these insights!

From Diagnosis to Advocacy

Rosalyn’s daughter was diagnosed with profound deafness and vestibular dysfunction as an infant, with progressive vision loss expected as she grew older. After receiving a cochlear implant at six months old, she began experiencing night blindness, light sensitivity, and peripheral vision loss at just five years old. Her family’s journey has required resilience, adaptation, and a commitment to helping her navigate the world with confidence.

Turning Challenges into Hope

The diagnosis changed the trajectory of Rosalyn’s family, reshaping their goals, careers, and experience of parenthood. Despite having no medical background, Rosalyn and Justin founded Save Sight Now to identify research roadblocks, fund critical studies, and advance the development of treatments for USH1B. Seven years later, their efforts have helped build the infrastructure needed to move promising research forward.

Their mission extends beyond their own daughter to the thousands of children and families affected by this condition. They have also made open, age-appropriate communication about their daughter’s disability a priority, empowering her to understand her condition and the foundation’s work toward a brighter future.

Funding the Future of USH1B Research

With promising research ready for support, Save Sight Now is working to increase its annual fundraising from approximately $500,000 to $1 million. The foundation relies on grassroots support from families, individuals, and communities to accelerate progress toward treatments that could preserve sight and change lives.

Rosalyn and Justin’s story demonstrates how determination, community, and parent-led advocacy can help move scientific research forward.

Join the Gift of Vision Gala

Save Sight Now’s 7th Gift of Vision Gala takes place on November 5, 2026, in Mill Valley, California. Featuring a sit-down dinner, auctions, and fundraising activities, the gala raises approximately 80% of the foundation’s annual funds.

You can make a difference by attending the gala, donating online, or sharing Save Sight Now’s mission with others.

Visit www.savesightnow.org to learn more and support vision-saving research.

ABOUT Rosalyn Porcano:

Rosalyn Porcano is the co-founder and Chief Development Officer of Save Sight Now, a parent-led nonprofit accelerating treatments for Usher syndrome type 1B (USH1B), a rare genetic condition that causes children to be born deaf and progressively lose their vision. Rosalyn and her husband, Justin, founded Save Sight Now after their daughter, Lia, was diagnosed with USH1B as an infant. Faced with no approved treatment to stop the vision loss, they turned their family’s diagnosis into a mission to move promising science toward the clinic.

Since 2019, Save Sight Now has raised more than $3.5 million and funded seven critical research projects, including disease models, natural history studies, and treatment development. The organization now brings together families, researchers, clinicians, scientific advisors, and industry partners around one urgent goal: preserving vision for children living with USH1B before it is lost.

Rosalyn leads Save Sight Now’s fundraising and development efforts and helps build the community of donors and partners making this research possible. She lives in San Rafael, California, with Justin and Lia. What began as two parents fighting for their daughter’s future has grown into a global community working to change the future for children with USH1B.

CONNECT with Rosalyn Porcano and Save Sight Now:

Website | Facebook | X | Linked In | Instagram | YouTube

Gift of Vision Gala 2026 – Thursday, November 5, 2026 in Mill Valley, California

Save Sight Now’s annual gala brings the community together to fund research aimed at preserving vision for children with Usher syndrome type 1B. Listeners can attend, sponsor, donate, or learn more at: https://www.savesightnow.org/gift-of-vision-2026 

🔊 CLICK HERE to play this show now!

Dr. Lynn Hellerstein, Developmental Optometrist, RIM Facilitator, award-winning author and international speaker, holds powerful and inspiring conversations with her guests in the areas of health, wellness, education, sports and psychology. They share their inspirational stories of healing and transformation through their vision expansion. Vision Beyond Sight Podcast will help you see with clarity, gain courage and confidence. Welcome to Vision Beyond Sight!

Dr. Lynn’s books are available at Amazon.com and www.lynnhellerstein.com/shop.

Dr. Lynn is available for speaking engagements and consulting. For more information, visit www.lynnhellerstein.com.

To learn more about vision therapy or to find a doctor providing vision therapy in your area, visit COVD.org.

To learn more about vision and the impact in concussion/brain injury, visit Neuro-Optometric Rehabilitation Association.

Subscribe to Vision Beyond Sight! New episodes every Wednesday at 9 am MT/10 am CT

Spotify | Stitcher | Audible | iHeart Radio | Amazon Music | Apple Podcasts | Google Podcasts