Jack Hogan - 2021 World Medical Innovation Forum
May 2–4, 2022
Jack Hogan
This speaker appears at this event:

This speaker appears in these events:

Jack Hogan

Patient, MEE

Jack Hogan was born in July of 2004, a perfect little blue-eyed baby boy. Jack’s parents noticed Jack would stare at lights, whether it was a lamp or a ceiling light at a very young age. They didn’t think much of it at the time. However as Jack became a toddler, he was unable to focus on picking up toys and items off the floor. Or he was unable to see items sitting right next to him. Jack struggled as a toddler.
At about the age of 3 years old, Jack’s parents took him to his pediatrician regarding their concerns. Our pediatrician said there was not much he could do for Jack. They needed to see a pediatric ophthalmologist. The doctor said it was Retinitis Pigmentosa. There was nothing they could do about it. There was no cure. There was no treatment.
Jack’s parents needed another opinion. After multiple doctors and multiple hospital visits, it was confirmed Jack had retinitis pigmentosa. Jack’s parents were told Jack was losing his eyesight as he was getting older. He would probably be blind by the time he was 20 or 30. And there was no cure. There was nothing they could do about it. They were also told it was genetic and there is a 25% of any other children they would have could potentially carry the gene for this blinding disease.
Jack was unable to see in the dark and had very little peripheral vision. Jack was not able to see in the movies, couldn’t see in dark restaurants. Jack was unable to see in school on the whiteboard of what the teacher may have been teaching. Jack was unable to go night swimming and could not play tag in the dark as many of the kids in our neighborhood did at the time. Many things kids were doing at night, Jack was unable to be included in because he could not see. Jack was unable to play baseball, basketball, hockey, etc. All because of his lack of peripheral vision. If Jack did go out at night , in the dark, he had a walking stick. Jack would hold his parents hand when walking outside in the dark. But as he got older, Jack would walk with his hand on a friend’s shoulder when walking outside in the dark. This is what Jack had to learn to deal with. It was very lonely.
When Jack’s parents learned of the RP, Jack’s mother immediately started to google: retinitis pigmentosa. Back in 2010, they found the Foundation Fighting Blindness and joined the cause immediately. Jack’s parents attended a Board of Directors dinner for the FFB in NYC. This was a life-changing dinner for them. They met Dr. Eric Pierce and told Dr. Pierce their story about Jack. In turn, Dr. Pierce told them about the amazing research he was working on in gene therapy. Dr. Pierce was working on a clinical trial for RP. He was moving from Children’s Hospital of Philadelphia to Massachusetts Eye & Ear in Boston within the year to continue with this research and work on the clinical trial. Jack’s parents felt that he was going to help their son. A complete stranger was going to change Jack’s life around.
They made one of the very first appointments with Dr. Pierce at Massachusetts Eye & Ear in Boston. One of the first items Dr. Pierce needed to know was – what gene? They needed to find out what was the defective gene? The family had gone back and forth to Boston for months with Jack for gene testing and blood testing. And as you can imagine it was not easy to take blood from a 5-year-old boy. They were told it could take years to figure out what gene. It was like finding a needle in a haystack. After about 9 months of testing, they discovered it was RPE65. The exact gene they were working on for a new clinical trial. Through this whole ordeal, how lucky were they to find the defective gene? And also how lucky they were to find out the clinical trial was for patients for RPE65 as well.
Dr. Pierce had explained that there was a clinical trial with the Luxturna drug starting for RPE65 and Jack was invited into the trial. It was amazing. Jack’s parents felt at the time, Jack was too young to be involved in the clinical trial. It would have been too much on him, traveling and missing school. They informed Dr. Pierce as soon as this was approved by the FDA, Jack would be his first patient. And 3 or 4 years later, that is exactly what happened. The drug Luxturna was approved by the FDA in Dec 2018. Jack heard from Mass Eye and Ear in January 2019. They were introduced over the phone to Dr Jason Commander, the surgeon who was going to do Jack’s surgery.
On March 20, 2019, at the age of 14, Jack had his first surgery on his left eye. Jack was the first person in the United States to receive gene therapy surgery. It was all over the news. Jack was famous. His 2nd surgery on his right eye was on March 29, 2019.
The drug Luxturna is not a cure. It is a one-time treatment. It was to help stop the progression of retinitis pigmentosa in Jack’s eyes. And perhaps give him some of his lost vision back. The surgeries consisted of inserting 3 drops of a liquid under Jack’s retina. Inside that drop of liquid a billion copies of a virus that contained a correct gene that Jack was missing (RPE65). So after they injected the liquid in Jack’s eyes, Jack had to lay on his back for 6 hours so the liquid can soak into the retina and the gene gets onto his support cells in his retina.
Before the surgeries, Jack’s eyesight was 20/120. Jack now is 20/80. Jack plays sports. Something he wanted to do for years. Jack entered Freshman year of high school in the fall of 2018 playing soccer for the freshman team and basketball for the freshman team at Rumson Fair Haven High School. This year Jack is playing varsity football and varsity basketball as a Junior.
Since the surgeries, Jack has regained sight in the dark and he also has better peripheral vision. It is not perfect. It will never be perfect. But he can see. And he is not getting worse. They went back and forth to Boston multiple times since the surgery for follow up testing. Every time Jack’s eyes are a little better. Nothing major, but ever so slightly.
Jack is now studying to take his SAT and prepare to go to college next year. Jack also had his first job this past summer as a busboy at a restaurant by the beach. He plans to go back to work this summer as well. Jack has been the Junior chair of the Vision Walk in New York cIty for the past 2 years. Jack spoke to a group of children at a local grammar in Fair Haven school during “Understanding Differences Day”, explaining to the children why he was different even though he didn’t “look” different. Jack has also continued to volunteer in the Fair Haven community, in events such as Harvest Fest and Fair Haven Snow Shoveling as well as The Valerie Fund. Jack continues to help share his story in the hopes he will help inspire others.

the Future of Medicine and AI

May 11–13, 2020 | Boston, MA