This morning the Club was privleged to have Kristin Smedley, one of the most inspirational speakers to ever join us.
A prolific and obsessive planner, as she self-described herself, Kristin's fun-loving spirit and energetic personality had guided her life in the direction of a becoming a dedicated and an stimulating third grade teacher, and after earning her degree. In time she added a husband, SUV, McMansion home and finally th etitle of "mom". Kristin was living her dreams. Both athletes, she and her husband thought ahead about Michael's sports opportunities.
But life doesn't always work out as planned
When her first son, Michael was four months old he was diagnosed as legally blind, the result of a genetic mutation shared by only 300 children in tth United States.
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. Her son's 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 her drams for her two boys seemingly crushed and 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!
With her sons in Council Rock schools, she refused to let the District set mediocre goals for them, ultimately forcing the District to provide equal opportunities and expectations for both Michael and Mitchell.
Both played on championship baseball teams and were named to their respective All-Star teams. Michael became Valedictorian of his graduating class and has since gone on to Penn State where he is a junior with a double major. Mitchell is a Junior at Council Rock while Karissa is a Freshman.
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 (“How I Learned to See Through the Eyes of My Sons”) 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 US Food and Drug Administration 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 her groundbreaking book, "Thriving Blind"
readers will see blindness in a whole new light. In fact, the compelling and entertaining stories will not only change perceptions of blindness, they’ll make readers forget the people featured are actually blind … or other seemingly impossible challenges which can interrupt and drastically change peoples lives and plans. It is available on Amazon and worth the read for anyone who has faced adversity.
(l to r) Michael, Karissa, Kristin and Mitchell
Kristin shared that there are several genetic advances being made, some of which hold the hope for reversing the genetic mutations which caused her sons' blindness. And, while such medical miracles are highly unlikely to ever help Michael or Mitchell, she hopes that research and genome editing technologies such a CRISPR-Cas9 (short for clustered regularly interspaced short palindromic repeats and CRISPR-associated protein 9) will give scientists a means of ultimately saving other parents the heartache she experienced when she discovered her sons were blind.
Further, she hopes her book and TED Talk will provide people facing life-changing crisis some tools to cope, regroup and reorient their lives to make such apparent setbacks as challenges to be overcome rather than an excuse for despair.
Kristin is truly a remarkable woman!
Kristin with Club President Jeff Revak