Beauty speaks: Raising awareness about retinitis pigmentosa

Beauty speaks: Raising awareness about retinitis pigmentosa

If you were to ask April Lufriu, crowned Mrs. America in 2011 and Mrs. World in 2012, what the secret to her success has been, she wouldn’t hesitate. It is her driving need to raise awareness about the disease that she, her sister, and her children all share—retinitis pigmentosa (RP). Read her story

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.

Eye Want 2 Know: A new genetic testing resource for the inherited retinal disease (IRD) community

Eye Want 2 Know: A new genetic testing resource for 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. Introducing Eye Want 2 Know, a deep dive into the importance of genetic testing and the resources that will help you get started. Read on

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.

Stargardt’s designer duo: Bradford and Bryan Manning

Stargardt’s designer duo: Bradford and Bryan Manning

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

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.

A doctor’s diagnosis: Cone rod dystrophy

A doctor’s diagnosis: Cone rod dystrophy

“Dr. Bill” Takeshita, renowned Los Angeles optometrist, was intimately familiar with the dramatic way that vision loss and blindness could change a life. He just never thought it would be his own. Read more

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.

Connecting you to low-vision services: Joseph Hall, Sr. and The Chicago Lighthouse

Connecting you to low-vision services: Joseph Hall, Sr. and The Chicago Lighthouse

Retinitis pigmentosa may have changed the arc of Joseph Hall’s life, but the Chicago man’s contagious optimism serves him well. Read more

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.

The undeniable case for genetic testing

The undeniable case for genetic testing

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

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.

Parenting children who have vision loss

Parenting children who have vision loss

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

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.

Commemorating Rare Disease Day 2018

Commemorating Rare Disease Day 2018

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

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.

Year in review: The aSharedVision community in 2017

Year in review: The aSharedVision community in 2017

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!

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.

Field notes from UCSF retinal specialist and researcher Dr. Jacque Duncan

Field notes from UCSF retinal specialist and researcher Dr. Jacque Duncan

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

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.

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 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.

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 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.

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 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.

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 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.

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 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.

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 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.

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 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.

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 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.

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 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.

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 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.