Kristin believes every person impacted by blindness deserves resources for thriving and options for sight.
In 2018, my oldest blind son was not interested in a cure for blindness because he was empowered with the tools he needed to succeed without sight. Fast forward to 2022 when he was graduating Penn Sate University, summa cum laude and a top recruit in his field… an no one would hire him due to the bias against blindness. He spoke words that slugged my heart: “Where are we at with a cure, Mom? The world is not ready for thriving with blindness.” I work harder than everyone I know to change how the world sees blindness and get options for sight on the table. My two blind sons and millions of others deserve that.
– Kristin Smedley, Co-Founder Curing Retinal Blindness Foundation, Co-Founder Thriving Blind Academy
Kristin started CRB1.org, the only patient organization in the world for CRB1 LCA/RP with a simple Facebook post recruiting other affected families. In less than 6 years, she was one of 12 people to testify at the FDA for the first ever gene therapy to treat an inherited retinal disease.
Additional highlights of Kristin’s work with CRB1.org:
Kristin’s two blind sons have beat every grim statistic for people that are blind. Kristin figured out the strategies and tools that worked for them and teamed up with a successful visually impaired friend to make the strategies of succeeding without sight repeatable and accessible.
Highlights of TBA thus far:
Blindness is not just a personal challenge—it’s a national crisis with widespread economic and societal impact. In the U.S., the vast majority of blind individuals face staggering barriers to employment and advancement, with unemployment and underemployment rates remaining unacceptably high for decades.
According to the Retina International Cost of Illness Study, the cost of not treating inherited retinal diseases and failing to provide resources for blind individuals to thrive costs the U.S. economy $31.7 billion annually. That includes lost productivity, healthcare costs, and the consequences of inaccessible systems.
This is a solvable crisis. Investing in vision research, accessible tools, and inclusion not only transforms lives—it makes smart economic sense. Every step we take toward treatments and empowerment is a step toward a stronger, more equitable America.
The Book
This book will transform your idea of what is possible for people who encounter a devastating life event and will catapult your motivation to set extraordinary expectations for your own life.
Welcome to Thriving Blind – a place where we change perceptions of blindness, Set Extraordinary Expectations, and give you tools to guide blind people to THRIVE!
I’ve been involved in the organized blind community for three decades, and we have annual conferences and other meetings where people present and where exhibitors exhibit. You bring a unique and wonderful energy, and your event was unique and of tremendous value. You are approachable, and so was the event. It was warm, relaxed, informative, and lots of fun.
Ron Brooks
Thriving Blind Academy Members receive a FREE VIP UPGRADE to the Summit (which includes all session recordings, give-a-ways, and more!) as well as monthly opportunities to chat with our speakers and mentors!
WATCH the replay of the Info Webinar with program details!
This book will transform your idea of what is possible for people who encounter a devastating life event and will catapult your motivation to set extraordinary expectations for your own life.
Reality TV star, YouTube sensation, Teacher of Year.
Have you ever dreamed of having one of these titles next to your name?
Maybe you dream of climbing Mt. Everest or becoming a successful CEO of a national organization. Now, would you consider any of this if you were… blind?
Kristin Smedley’s two sons were diagnosed as blind when they were each just four months old. Having no experience with blindness, Kristin expected a life of challenge for her boys. However, eventually she met a few people that would change her perception of what is possible for those navigating the world without sight. She decided to set extraordinary expectations for her sons, equipping them with tools and resources to navigate their world. Soon, tears became cheers as Kristin celebrated her boys’ successes in school, baseball championships and theater productions. Recently, Kristin delivered her oldest blind son to college a thousand miles away from home. Kristin’s boys, like the people in this book, aren’t just surviving blindness, they’re thriving.
While the stories in Thriving Blind demonstrate how blind people used creativity and determination to live the life of their dreams, the lessons they convey about facing fears and crashing through society’s barriers are transformative for all who experience struggles.
DON’T MISS IT!
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Kristin Smedley’s mantra is “Life is funny…sort of.” Her fun-loving spirit and energetic personality guided her life in the direction of a career in teaching. Kristin fantasized that she would one day be an inspiring third grade teacher, and after earning her degree, she landed her first job in education.
But fate had other plans, and Kristin found herself shockingly dealt a double dose of darkness. Her firstborn son, Michael, was diagnosed as legally blind when he was just four months old, despite the fact that she was advised the chances of having a blind child were one in one million. In fact, only 300 children in the United States shared Michael’s genetic mutation.
Once known for her smile, Kristin found herself devastated and angry. Yet fate wasn’t finished. Three years later, Kristin received another blow when her second son, Mitchell, was also diagnosed as legally blind at four months of age.
Before the birth of her babies, Kristin had never known a blind person. The boys’ retina specialist informed her family that both children would need white canes to navigate the world, and that neither of them would likely ever attend a normal school, pitch a baseball, drive a car, or be able to secure a great job. With no idea how to navigate their needs, Kristin saw little hope for their future.
Nearly suffocating from her own fears, Kristin knew she needed to overcome the anxiety, worry, and obstacles for the sake of her sons, but she had no idea how to proceed. Yet, knowing that Michael and Mitchell needed their mother to fight for them, Kristin began advocating for the tools her blind children needed.
As Kristin found and equipped her boys with the resources to help them thrive, they not only took on the world, but changed Kristin’s perception of blindness. With the right foundation and a multitude of resources and tools, her children have become popular, accomplished athletes, high-achieving students, talented musicians, and International Braille competition finalists, as well as typical big brothers to their sighted sister, Karissa, both teasing and supporting her as big brothers do!
In 2011, Kristin launched a mission to fund research and resources for children living with the rare eye disease her sons have. In less than eight years, the Curing Retinal Blindness Foundation has raised over a million dollars and achieved the first legislation in US history to be submitted in Braille—legislation that advocates for better resources for blind and visually impaired Americans.
In 2016, Kristin’s blog about changing people’s perceptions of blindness went worldwide and was followed by her 2017 TEDx Talk on setting extraordinary expectations. She partnered with Comcast media to spread awareness of the inclusive X1 product. Kristin was one of twelve people in the world invited to testify before the US Food and Drug Administration to advocate for the approval of the first-ever gene therapy to reverse blindness. Kristin is currently the Pennsylvania Ambassador for the National Organization of Rare Disorders (NORD).
Kristin, Michael, Mitchell, and Karissa now mentor families living with blindness, and Kristin’s public speaking engagements, book, and social media outreach teach others to move past their fears and obstacles to achieve extraordinary outcomes. You, too, can set extraordinary expectations and achieve your dreams. Please read and share Kristin’s story!
where Kristin and her family share tips, insights, successes and “epic fails” of raising blind children to chase their dreams, follow their passions and… thrive! You can “LIKE” the Thriving Blind community page on Facebook here !
