“From time to time we each encounter a struggle, a setback, that doesn’t exactly fall in line with our plans. I never planned on raising blind children. I never planned to launch a research organization. But I did face the challenges in front of me and learned how to not just survive, to thrive. It’s my turn to help others learn what I’ve learned.” Kristin Smedley
KRISTIN PARTNERED WITH MEDIA GIANT COMCAST!
Kristin and her family were featured in Comcast’s recent campaign to spread awareness of their accessible X1 Platform. The video had over 1.1 million views on YouTube making it the biggest campaign of it’s kind!
“Life is funny… sort of.” – Kristin Smedley
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, and after earning her degree, she landed her first job in education.
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, despite the fact that she was advised the chances of having a blind child were one in one million. In fact, only 300 children in the United States shared Michael’s genetic mutation.
Once known for her smile, Kristin found herself devastated and angry. Yet fate wasn’t finished. 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 babies, 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, both teasing and supporting her as big brothers do!
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 FDA 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, and Kristin’s public speaking engagements, book, and social media outreach teach others to move past their fears and obstacles to achieve extraordinary outcomes. You, too, can set extraordinary expectations and achieve your dreams.
IN THE MEDIA
BEN FM Woman of the Week interview: Click for Podcast of the interview with Marilyn Russell
Interview with Bonnie Bruderer on THE ASKBONBON SHOW https://www.youtube.com/watch?v=uSWuAdKRAdo
Interview with NBC10 Phildelphia’s Vai Sikehema: http://www.nbcphiladelphia.com/video/#!/on-air/as-seen-on/Cocktails-for-the-Cure-Seeks-Help-With-Rare-Disease/249832131(Kristin’s charity event “Cocktails for the Cure”)
Segment 1 of 2 on FOX29 http://www.myfoxphilly.com/story/23543729/blind-football-player-impresses (Kristin’s blind son and charity event “Bike the Basin”)
Segment 2 of 2 on FOX29 http://www.myfoxphilly.com/story/23561697/teenager-hopes-to-find-cure-for-blindness# (Kristin’s charity event “Bike the Basin”
The Midweek Wire: http://midweekwire.com/2015/02/12/connecting-the-community-students-schools-and-library-rally-to-create-a-collection-of-braille-childrens-books/ (Kristin’s community Braille library project)
People’s Choice Award, Bucks County’s Biggest Mover & Shaker, Bucks Happening Magazine (2014)
Distinguished Citizen Award, Northampton Township (2013)