Our commitment to the inherited retinal disease (IRD) community

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?

 Image of braille awareness bracelet featuring the words “support, community and resources.”

Today is World Sight Day, when the International Agency for the Prevention of Blindness focuses global attention on vision loss. At aSharedVision, we try every day to shine a light on this issue—particularly as it relates to inherited retinal disease (IRD) and the ever-growing mandate for genetic testing. Our efforts were inspired by people like Lorie Hirson.

When we first met Lorie, this dynamic mother of two and IRD advocate said something very telling about growing up with retinitis pigmentosa (RP). “One of the most challenging things about having my eye disease,” she said, “is that for the longest time—other than my brother—I didn't know anybody else who had my disease. It’s so rare! And that’s pretty lonely.” With aSharedVision, our hope was to create a site that would connect the dots between people living with various IRDs and replace that sense of loneliness—expressed by Lorie and so many others—with a feeling of community and a hope that science is changing the future for these diseases.

A new genetic testing resource is coming soon! Be the first to know. Sign up for email alerts

What started as an educational site to spark connection has grown. In response to your feedback, we’ve added more robust information to aSharedVision about the exciting field of gene therapy research, how genetic mutations cause an IRD, and the importance of genetic testing to identify the genetic mutation(s) responsible for your IRD. We also now have a Facebook page to share timely news events and provide important resources to anyone touched by an IRD. What’s next?

Well, it’s still under wraps, but we can tell you this: We’ll soon be bringing you a new resource to help in the important pursuit of genetic testing; so, keep checking back here for an upcoming announcement. In fact, you can make it easy on yourself by signing up to get our email alerts. That way, you’ll be in the know the moment we deliver the news right to your inbox.

As we band together on World Sight Day, let’s celebrate where we are as a community and—more importantly—where we’re going. Even though Sofia has Leber congenital amaurosis (LCA), Bradford and Bryan have Stargardt disease, and young Tyler Kitchengs has retinitis pigmentosa (RP)—all different IRDs—their experience of genetic vision loss knits them together into a special, rare community whose members all “speak the same language.”

Our goal is to highlight that connection and underscore the hope that science is building with gene therapy research. At aSharedVision, we are committed to bringing you the resources, information, and connections you might need to make the most of your big, beautiful life. Believe us when we say: It’s our pleasure.


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Disclaimer: The opinions and references found in this community story belong to the author alone, and do not necessarily reflect the opinions of aSharedVision.com or Spark Therapeutics. Spark Therapeutics is not responsible for the accuracy of any of the information supplied by third-party sites referenced in this story.