About Kristin Smedley
The First Story Isn’t Always the Whole Truth.
Kristin Smedley is a keynote speaker, author and nonprofit founder whose work is rooted in one idea: the stories we tell ourselves—about our own lives, about other people and about life’s curveballs—shape what we believe is possible. Change the story, and you change what you see, who gets access and what happens next.
Founder & CEO, Curing Retinal Blindness FoundationFounder, Thriving Blind AcademyBestselling authorTEDx speakerFormer elementary school teacher
Recognition & Impact
- RARE Champion of HopeGlobal Genes, 2019 (Advocacy)
- Siena MedalTheta Phi Alpha’s highest honor, 2024
- FDA TestimonyIn support of the first FDA-approved gene therapy for an inherited retinal disease
- H.R. 625Coordinated the first legislation in U.S. history submitted in braille
- Nearly $5 MillionRaised for CRB1 research and families, including a $1.25 million NIH research grant
- 32 CountriesReached by Thriving Blind Academy membership and programs
Kristin’s Story
The Story I Told Myself
When my son Michael was diagnosed as blind at four months old, the only story I had for blindness came from Little House on the Prairie. In that story, blindness was a tragedy. So that’s the story I told myself about Michael’s life—and soon after, about his little brother Mitchell’s, too.
I hated the white cane. To me it stood for everything my boys would never do. A doctor told us there might be hope for a treatment in 50 years.
Then, at three and a half, Michael looked up at me and announced, “This is the best day ever.” He wasn’t living my story. He was living his.
By six, he knew all about Erik Weihenmayer, the first blind person to summit Mount Everest. Michael had a story of possibility. I had to go find one. So I went looking for people who were blind and thriving, and every one of them gave me evidence that the first story I’d been told wasn’t the whole truth.
The white cane became what it always was: a tool for independence. Michael and Mitchell grew up playing sports, making music and competing, and both are now college graduates building careers of their own.
“The first story you see is not always the whole truth.”
What Kristin Believes
Every Curveball Comes With a Story
Kristin’s work is rooted in the stories we tell ourselves—about our own lives, about other people and about life’s curveballs. Those stories quietly decide who gets access, who gets an at-bat and what we believe someone can do. When we look again, we see more.
Look Again
Question the first story—about a diagnosis, a disruption or a person—and ask what else might be true.Give Access
Open the door to the room, the tool, the team or the opportunity. Access changes what a person can show.Build Evidence
Every at-bat creates evidence. Evidence changes expectations, and someone else gets their chance.
“You don’t have to know how the story ends to give someone an at-bat.”
From Hopeless to Champion of Hope
Hope in 50 Years? It Came Sooner.
Kristin was told there might be hope for her sons in 50 years. Instead of waiting, she started the Curing Retinal Blindness Foundation from her kitchen table in 2011, with no background in science or fundraising.
She went on to testify before the FDA in support of the first FDA-approved gene therapy for an inherited retinal disease, and to coordinate H.R. 625, the first legislation in U.S. history submitted in braille. The foundation has raised nearly $5 million, including a $1.25 million NIH research grant.
In 2019, Global Genes named Kristin a RARE Champion of Hope for Advocacy, one of the rare disease community’s most respected honors. In 2024, Theta Phi Alpha awarded her the Siena Medal, its highest honor, previously given to Maria von Trapp, Nancy Brinker and Helen Thomas.
The Work Today
Four Ways Kristin Helps People Look Again
Look Again Keynotes
Keynotes and workshops for corporate, life sciences and association audiences on questioning limiting assumptions, recognizing overlooked potential and responding to change.
Explore SpeakingStories That Change What We See
Thriving Blind, the Print + Braille picture book What I Can Be Is Up To Me and the Michael in Motion series, plus author visits and educator workshops.
Explore the BooksCuring Retinal Blindness Foundation
The foundation Kristin started in 2011 to fund research toward treatments for CRB1 retinal disease and to connect families with the tools they need today.
Visit CRB1.org (opens in a new tab)Thriving Blind Academy
A membership community for blind and low vision individuals, families and teens, with programs reaching 32 countries and the new Thriver Accelerator for ages 14–21.
Visit Thriving Blind Academy (opens in a new tab)
Coming to the Screen
The Story Is Becoming a Film
Curveball is a narrative feature film in development, inspired by the Smedley family’s true story: Michael’s fight to play Little League baseball as the first blind player in his community, and Kristin’s parallel journey from her kitchen table to the FDA and Congress.
When the film gets made, it will carry everything Kristin’s work stands for—access, expectations and what becomes possible when someone gets an at-bat. Kristin is the film’s executive producer.
Recent Highlights
Where Kristin’s Work Is Showing Up Now
- Life sciencesKeynote for chief medical officers at CMO 360Bringing Look Again to biotech and pharma leaders responsible for how clinical research is designed and delivered.
- Coming upFireside chat with Michael Smedley at ACRPKristin and her son Michael join clinical research professionals at the ACRP annual conference.
- October 2026Keynote and parent workshop in IndianapolisA week with the Indiana School for the Blind community, including a parent workshop and an evening keynote.
- 2024Siena Medal, Theta Phi AlphaThe fraternity’s highest honor, awarded since 1937 to women whose leadership creates lasting social change.
Off Stage
Philly Girl, Teacher, Mom of Three
Before the stage, Kristin was a first- and third-grade teacher—and she still teaches through every keynote, book and workshop. She is a proud Philly girl and mom to Michael, Mitchell and Karissa, and she will happily tell you that her kids were her best teachers.
Let’s Look Again Together
Book Kristin
Keynotes, workshops and fireside chats for conferences, companies and associations.
Bring Kristin to Your StagePartner With Your School
Author visits, educator workshops and books for classrooms and communities.
Explore School PartnershipsSupport the Mission
Help fund CRB1 research and give blind and low vision families the tools to thrive.
Support the Foundation (opens in a new tab)Prefer to start with a story? Get the Look Again Letter.