By
Kristin Smedley & Marissa Nasiatka

Our Interview with Kristin Smedley

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Imge of Kristin Smedley & her three children, Karissa, Michael, & Mitchell. The boys are diagnosed with Leber’s Congenital Amaurosis, which makes the boys blind. They are accompanied by white canes.

Kristin Smedley is an author, social media persona, advocate for the blind, non profit leader, founder of the new Assistive Tech Tank accelerator program, TEDx speaker, and mother. In the year 2000, 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 with Leber’s Congenital Amaurosis, the incredibly rare mutation in the CRB1 gene; only 300 children in the United States shared Michael’s genetic mutation. 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 sons, 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. 

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. Kristin’s public speaking engagements, book, and social media outreach teach others to move past their fears and obstacles to achieve extraordinary outcomes.

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, Kristin reveals the struggles of parenting two children; Michael and Mitch, who coincidentally have the same difference. She speaks of her journey of raising her boys to not just survive challenges, but to thrive. Kristin’s mission regarding blindness and resilience is truly a path of seeing through the darkness and changing perceptions.

 

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