Thursday Oct 12, 2017 was World Sight Day. It was also the day of a special meeting at the US FDA. I was involved in both.
For World Sight Day, millions of people around the world shared their stories of living with blindness, teaching blind children, advocating for blindness related things, and more. Retina International, an organization that has global members and worldwide impact, launched a new toolkit on that day to educate people around the globe about the importance of genetic testing for inherited retinal diseases. I was asked to contribute my voice to that toolkit to help folks understand the importance of genetic testing for blind and visually impaired children. You can view that video here http://www.retina-international.org/toolkit-redalert
The second event, the FDA meeting, was a much smaller event, but the impact… Huge. Ginormous actually. The FDA Cellular, Tissue and Gene Therapies Advisory Committee met to decide if they would recommend that the FDA should approve a gene therapy, Luxterna, to treat RPE65 blindness. I had the incredible opportunity to be one of fourteen people that testified on behalf of the gene therapy and urge the committee to recommend it for approval. (For a great summary of the event visit my friend Ricky Lewis’s blog about it here.)
If you follow my work you’ll know that October 12, 2017 was a big deal for me. A really big deal. Having two blind sons is a big deal. Running the patient organization for their rare eye disease is a big deal. Educating people about blindness and sight restoration is a big part of my life, and getting to do so on two stages, simultaneously, in two different parts of the world was…. Huge. Ginormous actually.
It’s a tricky dance to live in the blind community where we focus on succeeding regardless of sight, but also to live in the vision research community where we focus on developing treatments to restore sight. My experience is this: you can live in, and quite frankly ROCK, both worlds. My boys are thriving without sight (or Thriving Blind as we say). However, there are some things they’d love to be involved in that require sight. Are they sitting around waiting for the day their vision is restored? Nope. They are so darn busy living life that people often wonder just how blind they really are! As their Mom I work to give my boys options. Options for sight restored. Options for thriving blind. It’s up to them to take it or leave it.
[Tweet “As their Mom I work to give my boys options. Options for sight restored. Options for thriving blind.”]
There were so many incredible things about World Sight Day 2017 that I’ll remember forever. Many of the tweets about the Retina International toolkit were shared by my heroes in the blind community. Many of the people in the room at the FDA were people that I have looked up to (and kind of stalked) for the past six years. And every one of people that testified at the FDA meeting were people I respect and admire… a few I am blessed to call my friends.
But the best moment of the day came when the FDA committee gave the unanimous vote, u-nan-i-mous! Vote, to recommend that the gene therapy be approved. What I heard loud and clear in that moment is that my voice matters. And my sons matter. And options for blind people matter.
[Tweet “What I heard loud and clear in that moment is that my voice matters. And my sons matter. And options for blind people matter.”]
Seventeen years ago I was told my son was blind. I was told there was no hope for a cure for him. For years I have had to fight for books in Braille, accessible websites… countless battles to get my boys the resources they need. So many times I feel like blind people and things related to blindness just don’t matter to people in this world. On World Sight Day I heard a message loud and clear: Blind People Matter. Resources for blind people matter. Options for blind people matter.
I consider myself one heck of a blessed gal that I get to work with the best of the best to advocate for resources for blind people, resources that include thriving with blindness as well as reversing blindness. After all, I have two completely different blind children. One may jump at the chance to see. One may consider himself perfectly happy to succeed without sight. Either way, they are thriving. I am thriving. Science is thriving. It’s a good time to be involved in the work I do!
Kristin Smedley is an author, non profit leader and TEDx speaker. She originally planned to be a third grade teacher… and then two of her three children were diagnosed as blind. Kristin now shares her journey of raising her kids to not just survive challenges, but to thrive! She speaks around the globe regarding blindness and resilience, and she just launched her new series teaching people to SEE: Set Extraordinary Expectations! Watch her TEDx talk here and get info regarding her new book here. If you are interested to have Kristin speak at your upcoming event, email her at firstname.lastname@example.org or contact her here!