Monthly Archives: March 2017

Our Achievements and the Up and Coming

We have come so far and achieved so much, but what we are so very proud of is our brand new partnership with Inspire! Inspire is the leading social network for health, which connects patients and caregivers in a safe permission-based manner. Curing Retinal Blindness Foundation is now the retinal blindness community connection on Inspire’s platform! With one one leader per health arena, this is a big achievement for us. We are the go-to for retinal blindness, reaching out to any who are in need.

“Together we are better”

By having connections across the world 24 hours a day, seven days a week, members are able to obtain resources and the support they need regardless of location, background, or status. Feelings of isolation are extinguished, and this patient-centric platform is able to welcome you with experience.

 

Mutated CRB1 in human induced pluripotent stem cell derived retinal organoidsEberhard Karls University TuebingenInstitute of NeuroanatomyStefan Liebau & Marius UeffingEstablishing 3-DimensioAround the Corner

Curing Retinal Blindness Foundation isn’t stopping there, we are catapulting forward towards even more fundraisers, events, and partnerships! We want you to join us. Don’t hesitate and contact us today or sign up right now.

  • Cocktails for the Cure
    March 31, 2017 – As the name suggests, this annual event allows guests to indulge in cocktails to achieve a cure for CRB1 retinal disease. With speakers, dancing, live music, and much more, this event is surely one you won’t want to miss. Cocktails for the Cure will be happening at Spring Mill Manor with VIP Hour (special ticket/event sponsorship required) from 6:30-7:30PM and the Main event from 7:30-11PM.
  • TED event: Stanford MEDx-ED
    April 21, 2017 – Kristin Smedley is presenting yet another wonderful TED event, representing rare eye diseases on a rare disease panel.
  • Million Dollar Bike Ride for Rare Diseases
    Funded through our partnership with Penn Medicine, all proceeds of this event go towards life saving rare disease research.

At Curing Retinal Blindness Foundation, we are going to stop at nothing in finding treatments or a cure for retinal blindness. With your help and support, we have come this far, but we are going farther, and we want you with us. Contact us today, donate, add our events to your schedule, and go forward with us!  

 

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!