Kristin Smedley

My mantra is “Life is funny… sort of.” My fun-loving spirit and energetic personality guided my life in the direction of a career in teaching.

But, fate had other plans, and I found myself shockingly dealt a double dose of darkness. My firstborn son, Michael, was diagnosed as blind when he was just four-months old.

Once known for my smile, I found myself devastated and angry.

Yet fate wasn’t finished. Three years later, I received another blow when my second son, Mitchell, was also diagnosed as blind at four months of age.

Before the birth of my babies, I had never known a blind person. The boys’ retina specialist informed my 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, I saw little hope for their future.

Nearly suffocating from my own fears, I knew I needed to overcome the anxiety, worry, and obstacles for the sake of my sons, but I had no idea how to proceed. Yet, knowing that Michael and Mitchell needed their mother to fight for them, I began advocating for the tools my blind children needed.

As I found and equipped my boys with the resources to help them thrive, they not only took on the world, but changed my perception of blindness. With the right foundation and a multitude of resources and tools, my children have become popular, accomplished athletes, high achieving students, International Braille competition finalists, a recording artist and a Paralympics hopeful.

In 2011, I launched a mission to fund research and resources for children living with the rare eye disease my sons have. In less than eight years, the Curing Retinal Blindness Foundation has raised over 1.3 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, my blog about changing people’s perceptions of blindness went worldwide and was followed by my 2017 TEDx talk on setting extraordinary expectations. I partnered with Comcast media to spread awareness of the inclusive X1 product.

I was one of twelve people in the world invited to testify before the FDA to advocate for the approval of the first ever gene therapy to reverse blindness. I am currently the Pennsylvania Ambassador for the National Organization of Rare Disorders (NORD) and a 2019 Champion of Hope Award Winner.

In 2019 I published my first book, Thriving Blind: Stories of Real People Succeeding Without Sight, which achieved #1 New Release on Amazon for Kindle and paperback versions.

My message to everyone is that if I could do it, if I could pick myself up from hopeless devastation more than once and create an extraordinary life… if I could do that… so can you.