| 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. In the year 2000 Kristin was well on her way to accomplishing all of her goals.
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. Once known for her smile, Kristin found herself devastated and angry. Yet fate wasn’t finished. Three years later, Kristin received another sucker punch to her heart when her second son, Mitchell, was also diagnosed as legally blind at four months of age. With no idea how to navigate their needs, Kristin saw little hope for their future. Unfortunately, the world had no hope for their future either. Knowing that Michael and Mitchell needed their mother to fight for them, Kristin began advocating for the tools her blind children needed.
With the right foundation and a multitude of resources, her children have become popular, accomplished athletes, Dean’s List and National Honor Society members, recording artist, international Braille competition finalists, top blind athlete in the United States, sought after speakers, as well as typical big brothers to their sighted sister, Karissa.
Kristin has dedicated her life to making sure no other person has to sit isolated in devastation over a rare eye disease diagnosis, and she is on an extraordinary mission to change what it means to be blind.
In 2011, Kristin launched the only patient organization in the world for her sons’ blindness to fund research and resources for children living with the rare eye disease her sons have, CRB1 LCA/RP. In just nine years, the CRB1.org has raised over 1.4 million dollars and achieved a National Rare Eye Disease Awareness Day. That legislation, H.R. #625, was the first in US history to be submitted in Braille and it advocates for better resources for blind and visually impaired Americans.
Kristin partnered with Spark Therapeutics to help achieve the first ever FDA approved gene therapy to treat an inherited retinal disease in the United States. She has done a TEDx Talk in New York City to change perceptions of blindness and she partnered with Comcast media to spread awareness of the inclusive X1 product.
In 2019, Kristin published her first book called Thriving Blind: Stories of Real People Succeeding Without Sight. It achieved #1 New Release on Amazon for paperback and kindle. Kristin partnered with TMobile and the National Braille Press to make the book available in Braille. The book has evolved into the Thriving Blind Academy with a Mastermind, Membership and Mentoring program and is an international resource for families and educators of blind children. |
