Causes for Cures - FFB Beacon Stories
The faces behind RP Hope, Save Sight Now, and Sofia Sees Hope are all immensely dedicated to their nonprofit’s missions. The inspiration behind these organizations is similar, but their story and commitment are uniquely personal.
The Foundation wants to thank each of these organizations for their collaboration and for using their individual journeys to advocate for blinding diseases. We are stronger together – as a community.
Justin and Rosalyn Porcano welcomed their baby girl Lia into the world in March 2018. Shortly after her birth, Lia failed her newborn hearing test, diagnosing her with profound deafness. Luckily, Lia qualified and received cochlear implants a few months later. But in August 2018, Lia’s genetic testing results concluded that she was also going blind due to Usher syndrome type 1B with variants in the MYO7A gene.
“Lia’s diagnosis was devastating,” says Justin. “It’s indescribable what it’s like to find out your daughter is going blind, and that looming feeling doesn’t fade.”
A few weeks after receiving the shocking news, Justin started researching applicable treatments for Lia, learning there are cures on the way, but that USH1B is more severe and progresses quicker than other types of Usher syndrome. Immediately feeling a sense of urgency, Justin and his wife Rosalyn knew they needed to be proactive and help.
“It didn’t make a lot of sense for us to try and run our own standalone nonprofit as parents of a young child with significant needs while simultaneously educating ourselves on Usher syndrome research,” says Justin. “So, we looked to partner with existing nonprofits, and couldn’t find anyone we aligned with until we found the Foundation Fighting Blindness.”
After finding the Foundation, Justin and Rosalyn started their organization, Save Sight Now. Their mission is dedicated to raising funds to support Usher syndrome type 1B (USH1B) and retinitis pigmentosa research. Branding themselves as a “mom and pop charity,” Justin and Rosalyn have been able to leverage their local North Bay Area community to raise awareness and funds but have also connected with others in the Usher syndrome community across the world.
“Taking action and starting Save Sight Now has been our coping mechanism,” says Justin. “As a father of a child affected, how can I not do everything I can. I have to be the one to learn and help. Parent-led organizations like ours are so important and can really drive the research.”
“As a father of a child affected, how can I not do everything I can.”
Save Sight Now has been in operation for just over two years and has already raised just under half a million dollars. Their very first fundraiser was a crowdfunding video sharing their family’s story, which alone raised $200,000. In 2020, Justin and Rosalyn created a virtual event called Gift of Vision, which will be their annual event moving forward. Save Sight Now has also just launched a new evergreen fundraising campaign called USH Supporter Events, encouraging personal do-it-yourself (DIY) fundraising for their supporters.
In addition to managing Save Sight Now, Justin works full time, and his wife Rosalyn works part-time. Justin is also a member of the Foundation Fighting Blindness Board of Trustees. But despite their busy lives, they’ve both become extremely knowledgeable about USH1B research.
Justin has discovered and directly contacted many research leaders in the space. Dr. Shannon Boye, at the University of Florida, was one of the first researchers Justin got in touch with early on in his learnings, and now she’s very involved with Save Sight Now often acting as an educator and advisor.
“Letting these researchers know that the parents are behind them is extremely valuable in motivating their work to continue their efforts,” says Justin. “I don’t think enough parents realize that they matter and can make a difference.”
Justin and Rosalyn often feel like they’re in a race against time for Lia, but starting Save Sight Now has given them a glimmer of hope.
“Very encouraging research is advancing, but not quick enough,” says Justin. “The science is there, but the funding is not. Our money is going to promising research, and that’s what keeps us going. There are therapeutic treatments on the horizon, and we feel it’s our responsibility as parents to help these dedicated researchers cross the finish line any way we can.”
Article by the Foundation Fighting Blindness - Full Beacon Stories article HERE