Please walk with me to end blindness
Timothy O'Brien
VisionWalk 2018, where we raise money to fight blindness, is two weeks away and I need your help in the fight. Please join our team, Soles4Sight, to have fun while we walk to ensure no more kids face the challenges I had while growing up.
RTI has been a strong supporter of VisionWalk for the last four years. Many colleagues have come out for the walk and even more have supported the cause in spirit and with wallets. RTI’s Community Partnership program is supporting our team again this year!
Every day, there are new developments in the fight to end retinal degenerative diseases like mine. Just yesterday, the Boston Herald reported on the story of Jack Hogan: “A 13-year-old patient at Massachusetts Eye and Ear with hereditary vision loss became the first-ever recipient of a gene therapy to prevent blindness after FDA approval — and two months later, he can already see the whiteboard in math class and play nighttime sports with his friends.” (read the full article below). Each step we take and each dollar we raise for VisionWalk brings that cure just a little bit closer.
Please sign up (or donate) at this link: Soles4Sight 2018.
Thank you!
Teen seeing a big difference after landmark gene surgery
A 13-year-old patient at Massachusetts Eye and Ear with hereditary vision loss became the first-ever recipient of a gene therapy to prevent blindness after FDA approval — and two months later, he can already see the whiteboard in math class and play nighttime sports with his friends.
“Everything is great. I can ride my bike and play basketball at night,” said Jack Hogan. “I’m very happy and very satisfied.”
Hogan and his parents traveled from New Jersey two months ago to receive the first FDA-approved gene therapy given to a patient for any inherited disease.
Hogan’s specific condition has left him without a functional RPE65 gene, which is responsible for making a protein that is needed for normal vision. Some of those with the RPE65 deficiency are blind by the time they hit their 20s or 30s.
Jack has a milder version, but he had no peripheral vision and could not see at night.
Now, Jack is able to see in light that is three times dimmer. He can read fine print that is 40 percent smaller, and the vision in his left eye has gone from 20/100 to 20/70. That means what most people can see at 70 feet away, he can see at 20 feet away.
The vision in his right eye is stable at 20/80.
“I’m just so grateful,” said Jeanette Hogan, Jack’s mother. “He was really struggling. You just want your kids to experience life the way they should, and now he can.”
The surgery involved injecting a copy of the missing gene underneath the retina.
The treatment is called Luxturna and is made by Spark Therapeutics in Philadelphia. It costs $850,000 for both eyes.
In clinical trials, 27 out of 29 patients saw better in dim light.
So far, the results have been shown to stay stable after four years.
“Nothing was guaranteed,” said Dr. Jason Comander, who performed the surgery. “To see it coming through for him is great.”
Triangle VisionWalk
Saturday, June 2nd, 2018
Brier Creek Park
Join the team (Soles4Sight): http://www.fightblindness.org/goto/soles4sight2018
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