Soft Magazine - Kindle Edition - September 2019 – Misty Lovelace

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She remembered when she was in fifth grade and someone brought in a big drum, which turned out to be a celestial telescope. Everyone in the class, except her, could see the stars. Before Misty’s mom passed away, shortly after her eye surgery, mother and daughter shared a special time.

Horses are very, very, very amazing creatures. They can sense your emotions. They can read you like a book. They are very smart, intelligent animals.” For Comander, Luxturna was an inspiration, one that he said has helped fuel greater interest in gene therapy. "Many careers have been dedicated to expanding on the success of Luxturna, and it's made a huge difference in the field," he said.

Misty Lovelace in Black Bat Returns, Episode 1

It's unclear how many people have received Luxturna since. A Spark spokesperson told BioPharma Dive the company does not disclose that information. In 2019, the company told the Philadelphia Business Journal it had shipped 75 vials of the gene therapy in its first year post-approval. (One vial is used per eye.) It just helped me. It helped people trust me because not everyone is going to let a visually impaired or blind person ride a stubborn, crazy horse.”

Creed was Berrocal's first Luxturna patient. As a pediatric retina specialist, Berrocal said Spark sought her out in the fall of 2017. To date, she's performed a dozen surgeries, all of which have yielded positive results. And now, at 18, the age when a doctor predicted Misty would be blind, she is ever so grateful for her sight. A passion for horses It’s amazing; I never thought that detail could be detail,” she said. “I can see hairlines, I can see little things that are so, just so nice. I see colors and bright neon colors.” They sat me down and said the surgery could make it the same, make it better or make it worse. Facing a choice between waking up blind before 18 or the surgery’s going to do it, you gotta take a risk.”

Sleep of the Spider-Woman

Misty underwent the revolutionary treatment in 2013 when she was 13, and she experienced greatly improved vision in 24 hours. Video contains male/female fighting, multiple chloroform KOs, injection KO, multiple sleeping gas KO, multiple electric KOs, gas mask KO, over the shoulder carry, butt spankings, and limp play. Luxturna also benefits each patient differently. Comander said the vast majority gain some night vision, while others report improvements in central or side vision. Some see more substantial improvements — one of his patients was able to see in up to one thousand times dimmer light than in pre-surgery exams. Many have been able to walk without canes and read without using Braille after surgery. She gets along with horses well because her visual impairment gave rise to what she calls a sixth sense. She said she often can feel people’s presence before it is obvious, and horses possess similar instincts.

Gordon "Creed" Pettit was one of the kids who couldn't get into clinical trials for Luxturna. His mother, Sarah St. Pierre-Pettit, brought him from Florida to the University of Iowa a number of times. But he couldn't get through the tests needed to qualify him for treatment. The two met and married at Harvard Medical School—Maguire was becoming an eye surgeon, and Bennett, who also had a PhD in developmental biology, was about to enter the new field of gene therapy. Working together, the pair showed they could improve the vision of mice born with genetic blindness. In 2000, they tested this on Briard dogs who had been born with defective copies of RPE65, the gene affected by LCA. As a preteen living with her grandparents, Misty consented to genetic therapy surgery as part of clinical trials for the recently approved drug called LUXTURNA™. Dr. Robert A. Sisk of Cincinnati Children’s Hospital Medical Center did find the right problem and he sent a sample of Misty’s blood off to Children’s Hospital of Philadelphia, where she was genetically diagnosed with LCA-RPE65.They drew them on a piece of paper. Kids asked if I could see them and I said, ‘Yeah,’ even though I didn’t really see. Kids are mean, they always have been. As soon as I went to middle school, I started to be put down. I was called Helen Keller, kids were absolutely awful.” Misty’s treatment became available to the public during the past year under the name Luxturna. Its FDA approval in December 2017 was huge news—not only for the 1,000 to 2,000 Americans with Misty’s type of LCA, but for people with other genetic diseases that could one day be cured through gene therapy. From a young age, Luke Ward told his mother, Stephanie Joachim, about his dream of playing soccer. But the sport — as well as many other daily tasks — seemed out of reach. And as Luxturna keeps working, other drugmakers hope to replicate its success. The eye, in particular, is the focus of many gene therapy developers, as it's easy to access and targeting it doesn't carry as many safety risks as other organs. Novartis, which sells Luxturna in Europe, AbbVie, Biogen and Johnson & Johnson are all exploring gene therapies for the eye. There were innumerable obstacles along the way,” said Bennett, 63, curled up in a chair with her coffee. Maguire, 58, handed me a jar of honey from his beehives. He told me his wife deserved credit for frequently staying up working late while he was “snoring in bed.”