Why I love being a teacher of students with visual impairments (TVI)

Why I love being a teacher of students with visual impairments (TVI)

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

Disclaimer: The opinions and references found in this patient 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.

A view into the science of gene therapy research

A view into the science of gene therapy research

Spark Therapeutics has created a video that explains the exciting science behind gene therapy research. It’s a short look at how scientists are working to address rare genetic diseases, including inherited retinal disease. Watch the video

Disclaimer: The opinions and references found in this patient 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.

Stargardt disease: Josh Bennett’s “race of truth”

Stargardt disease: Josh Bennett’s “race of truth”

You might not consider time trial cycling to be the right option for a legally blind man, but you’d be wrong. Josh Bennett illustrates how determination and grit can open even the most unexpected doors.  Read his story

Disclaimer: The opinions and references found in this patient 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.

Why I got genetically tested

Why I got genetically tested

Genetic testing gave Theresa Taylor the information she needed about her Leber congenital amaurosis, and inspired an advocacy trip to Capitol Hill. Read more

Disclaimer: The opinions and references found in this patient 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.

Understanding how genes, DNA, and proteins lead to inherited retinal disease

Understanding how genes, DNA, and proteins lead to inherited retinal disease

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

Disclaimer: The opinions and references found in this patient 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.

Blind ambition

Blind ambition

Here’s the story of Janet LaBreck, who was one of four siblings born with retinitis pigmentosa. Janet rose above tremendous physical and financial limitations to eventually become President Obama’s Commissioner of the Rehabilitation Services Administration. Read her story

Disclaimer: The opinions and references found in this patient 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.

My guide dog and me: A renewed sense of independence with retinitis pigmentosa

My guide dog and me: A renewed sense of independence with retinitis pigmentosa

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

Disclaimer: The opinions and references found in this patient 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.

Rare Disease Day 2017

Rare Disease Day 2017

Approximately 30 million Americans are affected by rare diseases, which is why every year on the last day of February, we celebrate “Rare Disease Day.” Read more

Disclaimer: The opinions and references found in this patient 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.

Living with vision loss in a sighted world

Living with vision loss in a sighted world

Braille might help when reading a book, but it won’t help you read a room! Two moms and a teen share tips on how they cope—or help someone else cope—when somebody in the family has an inherited retinal disease (IRD). Watch video

Disclaimer: The opinions and references found in this patient 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.

An IRON[WO]MAN takes on choroideremia

An IRON[WO]MAN takes on choroideremia

Throughout her pregnancy, Stephanie, whose father has choroideremia, waited for the other shoe to drop. She was a carrier; would her son also have the disease? When that shoe did drop, she put it on, started running, and hasn’t stopped since. Read more

Disclaimer: The opinions and references found in this patient 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.

Spark Therapeutics launches genetic testing initiative

Spark Therapeutics launches genetic testing initiative

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 what happened next. Read story

Disclaimer: The opinions and references found in this patient 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.

Sharing my vision

Sharing my vision

When graduating high school student Jack McCormick realized that his Leber congenital amaurosis (LCA due to mutations in the RPE65 gene) could be an obstacle to success, he was devastated. That’s when he got busy. Read more

Disclaimer: The opinions and references found in this patient 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.

An artist with hearing and vision loss drives retinal research using a global online registry

An artist with hearing and vision loss drives retinal research using a global online registry

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

Disclaimer: The opinions and references found in this patient 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.

Dancing in the dark

Dancing in the dark

Sofia, 13, believes that success rests in the power of perseverance—and elegant pliés, of course. Leber congenital amaurosis (LCA) may be limiting her vision, but it isn’t stopping this young ballerina from pursuing what she loves. Watch video

Disclaimer: The opinions and references found in this patient 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.

Accessible by design

Accessible by design

When designing a site for those with low or declining vision, every choice matters. Fonts, colors, and navigational labels take on new significance when it comes to the job of ensuring accessibility. Read more

Disclaimer: The opinions and references found in this patient 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.

Online resources for raising a blind child: Then & now

Online resources for raising a blind child: Then & now

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

Disclaimer: The opinions and references found in this patient 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.

One woman's journey

One woman's journey

This mother of two won’t let declining vision, a lack of available treatment options, or the 1.5-mile swim from Alcatraz to San Francisco stop her efforts to support retinal research. Watch video

Disclaimer: The opinions and references found in this patient 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.