Saturday, April 13, 2019
Kristin Smedley is an award winning non-profit leader, TEDx speaker, and author—but she never planned on any of that. Kristin did plan to be a great third grade teacher, however her personal path to greatness took an unexpected turn when two of her three children were diagnosed as blind. She had to learn the tools of blindness and build a team of experts that would help her and her boys navigate this path that she had not been trained for. Kristin’s two blind sons are now thriving as gifted high school students, elected student council officials, baseball championship winners, International Braille competition finalists, and social butterflies. Her oldest blind son is thriving at college a thousand miles away from home.
In 2011 Kristin founded the Curing Retinal Blindness Foundation, the only patient organization in the world for her sons’ blindness, CRB1 LCA/RP. Kristin has led the CRBF to raise over $1 Million, introduced the first ever legislation in the United States in Braille, and has moved rare eye diseases from rarely talked about to being discussed in key circles worldwide.
In 2017 Kristin delivered a TEDx talk in New York City regarding how her blind sons completely changed her perception of blindness. Later that year, Kristin was one of only twelve people in the world to testify at the FDA on behalf of the first ever gene therapy to treat blindness. That gene therapy, LUXTURNA, became the first ever gene therapy for an inherited disease to be granted FDA approval. In May 2018, Kristin was invited to the National Rare Disease Awards in Washington, DC to present Spark Therapeutics with the Innovation Award for LUXTURNA.
In 2018 Kristin and three colleagues launched a podcast on iTunes, 4 Chicks Chatting, and she will publish her first book, Thriving Blind: Stories of Success Without Sight. Kristin’s reputation for being a community champion and motivated collaborator has helped her to be named the Power Person of Bucks County (Bucks Happening) for 2017 and 2018.
Kristin enjoys speaking about her journey and pointing out where she can find the fun in fundamentally challenging situations life delivers. Kristin’s signature keynote speech challenges people to SEE: Set Extraordinary Expectations in their lives. Kristin’s mantra is: Life is funny… sort of! When she isn’t out in the world changing people’s perception of blindness and rare disease, she can be found at her home in Bucks County, PA with her three children playing Family Fued, coaching soccer camps, or hosting a jam session with friends!