Category Archives: BLOG

Perceptions of Blindness: TEDxLincolnSquare Event in New York City

On March 28th, award-winning nonprofit leader, rare eye disease advocate, up and coming author, and mother, Kristin Smedley, will be speaking in New York City at a TEDxLincolnSquare Event. Her focus will be on perceptions of blindness and “How I Learned to See Through the Eyes of My Sons”. It will be both live-streamed from and shared at the intimate and charming Triad Theater, along with other live speakers, two recorded TED Talks, and live music performances. This is not an event you want to miss! See details below.

TEDxLincolnSquare: Risk Takers and Change Makers
March 28th 10AM-4PM
Triad Theater: 158 West 72nd Street, NYC, NY 10023   

Kristin Smedley, co-founder and president of Curing Retinal Blindness Foundation, will be exploring what many others face in today’s society. How do we perceive blindness today–where do our expectations lie? From her standpoint, we need to raise the bar; we need to start believing in vitality.  

A mother of three, two of her children were diagnosed as blind. She toiled through crushed expectations, thinking that everything she had hoped for her two sons was now for naught because they were blind. But as she went on, she derived hope that shifted her expectations of what might still be possible. Erik Weihenmeyer climbed Mount Everest without sight, why couldn’t her sons go on to achieve great heights as well?

What it came down to was perception. The blind have lower expectations, but that doesn’t mean that’s all they are capable of. Through their journey, Kristin’s boys were able to advance in a world that is visually-inclined, defeating the stigma of low expectation that surrounds them. They face their challenge equally, sighted or unsighted, in order to achieve their dreams and pursue their passions.  


Thriving Blind: The Book  

On the same topic as her TEDxLincolnSquare talk, Kristin Smedley’s new book is also scheduled to be available for pre-order on the same day. “Thriving Blind” explores the concept that those with sight have no idea what the blind are capable of, leading to a life of dependence, underachievement, and low expectations. Her book serves as a lesson and as an inspiration, telling stories about the journeys that some have gone through to get to where they are.


Please tune in to the TEDx event as we raise awareness for CRB1 retinal disease alongside of Curing Retinal Blindness Foundation!


A Year in Review: Our 3 Biggest Steps Toward the Cure

For us, 2016 has been a year of successes, propelling us forward into the New Year. We face many challenges every day, but because of your help and dedication to the cure, we were able to take so many important steps this year. Together, it has been proven that we can do many things, hold many events, and get that much closer to curing this retinal eye disease.  

We want to walk you through this year so each of you can see how far we’ve come with your help. Here’s our top 3!
shutterstock_134971778We partnered with The Mighty.

Just recently, we have joined hands with The Mighty to spread awareness about CRB1 degenerative retinal disease. The Mighty is a story-based health community whose focus is to inspire rather than inform. They publish real stories about real people who pass along their challenges and share courage, hope, and camaraderie. In partnering with this community, we are able to create a niche that tells those facing Retinitis Pigmentosa (RP), Lebers Congenital Amaurosis (LCA), or Cone-Rod Dystrophy that they are not alone in this. We will fight together.  

We Biked the Basin.

We were able to hold our 6th annual Bike the Basin fundraiser event, and we are proud to announce that this one was our biggest and best to date! Open to everyone, we had multiple options for all age brackets, including our #BIKEFORSIGHT team members from across the globe who were able to send photos, videos, and donations. Let me tell you, the most important part: we all had fun while doing it!  

We Made History on Capitol Hill.

In February last year, we made history. We were able to present for the introduction of a resolution (H.Resolution #625) that designates February 28th as National Rare Eye Disease Awareness Day. The resolution was presented in print as well as in Braille, making it the first of its kind in the history of the United States of America. We are still beside ourselves with gratification to be able to bring about this momentous step towards finding the cure.  

For 2017, we are working hard to make this year even better! It certainly is an obstacle, but we are sure all of us can handle it. We want to thank everyone for the progress we have made in 2016, and now turn to make 2017 the year we find the cure!  

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