Families, specialists and advocates share stories and advice about living with inherited retinal diseases (IRDs).
Whenever we uncover an unmet need in the IRD community, we roll up our sleeves and get to work. In honor of World Sight Day, here’s a look at some of the resources we’ve created for you so far. What’s next? Read on
More community stories:
Sometimes it takes a village to give birth to a dream. Of course, a celebrity endorsement never hurts, either. Two blind brothers share their vision with the world. Read more
Retinitis pigmentosa may have changed the arc of Joseph Hall’s life, but the Chicago man’s contagious optimism serves him well. Read more
This grandfather and grandson were both diagnosed with retinitis pigmentosa as young boys. The difference in their experiences, however, is measured by more than years. Scientific advances in genetic testing and gene therapy research are transforming the diagnostic journey. Read their story
Growing up with a sister who slowly lost her sight to retinitis pigmentosa (RP) could never have prepared April Lufriu, former Mrs. World, for the diagnosis of her own two children. Then, when the retinal specialist asked to examine Lufriu’s eyes, the world slid sideways. Read her story
Did you know there are as many as 7,000 rare diseases impacting the lives of ~25–30 million Americans, many of them children? To commemorate Rare Disease Day 2018 and raise awareness of these diseases, we encourage patients to share their stories, build communities, and help advance research for change. Read more
Happy New Year! Before we get too far into 2018, let's look back at 2017 on aSharedVision. We crunched a few numbers to discover: 1) who makes up our community, 2) which stories they are most interested in, and, 3) which inherited retinal diseases (IRDs) they wanted to learn more about. Read on!
We reached out to a University of California, San Francisco clinician and researcher to get her take on the quickly evolving research landscape and the growing mandate for genetic testing. Read more
Once Victoria Romano experienced the magic of working in the classroom at Philadelphia’s Overbrook School for the Blind, she knew she’d found her calling. Read her story
While the science of genetics might not actually be rocket science, it’s just as complex. We checked in with a genetic counselor, and asked her to explain how genes, DNA, and proteins create the “blueprint of you.” Read more
Becky Andrews, diagnosed with retinitis pigmentosa at 18, found a new freedom in life when she decided to partner with a guide dog. Read more
At Spark, we are continually talking to patients and their families to understand the needs of the IRD community. You told us you wanted help with genetic testing, and here’s one way we responded to that ask. (Note: The community story details a program created by Spark that is not offered at this time.) Read story
Those living with inherited retinal diseases (IRDs) share information with physicians and scientists who are hoping to uncover new ways to address inherited forms of vision loss. Read more
When doctors diagnosed Amber Bobnar’s son with Leber congenital amaurosis in 2005, looking online for support was a lonely and difficult thing. My, how things have changed. Read more