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 October 2017 Kristin was selected by the National Organization of Rare Disorders (NORD) to be the Pennsylvania Ambassador for it’s Rare Action Network. The Rare Action Network℠ (RAN) is the nation’s leading advocacy network working to improve the lives of the 30 million Americans living with a rare disease at the state level. RAN serves as a broad spectrum of stakeholders ranging from patients, to their families, caregivers, and friends; from researchers to industry; to physicians and academia. While working predominantly at the state level, the network will filter information up to NORD’s national federal policy team to help address issues of national concern.
Kristin’s two sons are blind due to a rare genetic degenerative disease, CRB1 retinal disease. In 2011, Kristin found other families affected with this disease and founded the Curing Retinal Blindness Foundation to raise funds and coordinate research projects for CRB1. The CRBF is the only organization in the world for this disease. Find out more about this incredible effort at www.crb1.org
Bike the Basin, created and managed by Kristin and her family, is the largest fundraiser for the Curing Retinal Blindness Foundation. It has become a movement in Kristin’s hometown of Bucks County, PA as hundreds upon hundreds of youth ages 1-22 take part in the event. While the main event is a morning of youth cycling and volunteering, many children, families and organizations coordinate fundraisers throughout the year. Bike the Basin has raised nearly $500,000 in 5 years! To see this incredible mission visit www.bikethebasin.org
Kristin is partnering with the Miracle League of Northampton Township to bring goalball and beep baseball, two sports for blind athletes, to Bucks County.
Like most libraries in the United States, Kristin’s neighborhood library did not have a Braille book collection for her boys and other blind and visually impaired readers to enjoy. Kristin and her family, along with their elementary school and the library itself changed that. In 2015 the Free Library of Northampton Township opened it’s first ever Braille juvenile book collection, which sits on the shelves right in the middle of the print collection and is available for inter-library loan for the entire county.