For Nicholas McNiel, finding a cure for blindness is personal. The 17-year-old Friends Academy senior and Glen Head resident, whose father suffers from a disease that has caused him to gradually lose his eyesight, has taken on a leadership role in a cause to fight diseases that many people have never heard of, though many are affected by.
McNiel requested to be this year’s Foundation Fighting Blindness Long Island VisonWalk’s Youth Chair for the fundraiser that took place recently. The 6th Annual Long Island VisionWalk was held at Jones Beach State Park, a 5K, family-friendly walkathon fundraiser. Approximately 450 walkers attended the event, which raised more than $125,000. He said his goal is to raise awareness and find a cure, for his father as well as all the others affected by genetic blindness.
Like most high school seniors, McNiel is a busy student; in addition to the VisonWalk Youth Chair project, which requires him to interview families around Long Island with children who suffer from blinding retinal diseases, he is taking three Advanced Placement (AP) courses and was involved in the school play this fall. Every evening, after completing his homework and attending play rehearsals, McNiel says he devotes about an hour each evening to work on the project.
His project consists of speaking to and writing about local children, young adults and their families who are affected by retinal degeneration diseases. His articles will be published on the website for Foundation Fighting Blindness, and may also appear in his school newspaper or local newspapers next spring, once his project is complete.
“The thing about these diseases is they are not set in stone,” McNiel told the Record Pilot. “The degree varies, and they progress at different rates depending on the people and circumstances.”
His father was diagnosed with retinitis pigmentosa (RP) at age 13, a genetic disease that has caused him to gradually lose his eyesight over the years, to the point where he has not been able to clearly see faces for the past two years. However, raising awareness of these types of diseases has proven to have a positive impact on the search for a cure. McNiel says that the science has progressed and the gene that causes his blindness has been identified. A clinical trial, currently in phase two, has so far enabled 45 people to regain sight.
“I felt a responsibility to take on the role; it is not like a chore, it just felt like something I had to do,” says Nicholas on requesting to be the youth chair.
Since beginning this project, McNiel says he has learned about how positive some people have reacted to their diagnosis. One of his interviewees, Samantha Ambrico, for example, is very active and does not let the loss of sight drag her down.
His mother, Wren, notes that there are a lot more people who are vision impaired than most people are aware of, partially because we expect it more in older individuals, or we expect them to use a cane, but in fact a lot of people have such varying degrees that they hide it well.
In fact, McNiel adds that his father is tall enough so that he doesn’t have a lot of trouble walking around, and so a lot of people don’t even realize that he suffers from loss of sight.
The Foundation Fighting Blindness has raised more than $450 million for retinal disease research since its founding in 1971. According to (the brochure) there are now gene, stem cell, and drug therapy clinical trials underway for a number of retinal diseases, including Leber congenital amaurosis, age-related macular degeneration, Stargardt disease and retinal pigmentosa. For more information visit Visionwalk.org and fightblindness.org.
“The science is finally hitting its stride,” says Wren. “Once one gene is identified, it could have a snowball effect and it won’t take long for others to be identified and, hopefully, cured.”
Wednesday, 22 October 2014 00:00
Richie Cannata may be best known for his song credits but his name will become a part of history this week. Cannata, a 28-year resident and business owner of Glen Cove, will be inducted into the Long Island Music Hall of Fame on Thursday, Oct. 23 at The Paramount in Huntington.
As a member of the Billy Joel Band, the saxophone player was propelled to fame in 1975 when he joined the band and played on songs including “New York State of Mind” and “Scenes from an Italian Restaurant.”
Saturday, 18 October 2014 00:00
If Heather Lehrman is not yet a familiar face to local pet owners, her name is likely to soon become a household name to dog lovers and families with young children, as her children’s book, Bullied at the Dog Park, was released this week. The book is based on a real-life incident with her own dog, Herbie, and fans will have a chance to meet her and Herbie at a book signing at Petco in Glen Cove on Saturday, Oct. 25.
“I wanted to help get the message out in my own way about the effects of bullying,” says Lehrman, a resident of Great Neck. “This book teaches children valuable lessons about treating all dogs (and people) with respect, and the importance of simple kindness.”
Thursday, 16 October 2014 00:00
On Tuesday, Oct. 7, the Glen Cove Finley Middle School opened their football season with a home game against Thompson Middle School. The game opened with the Glen Cove offense going on a nice drive, which saw quarterback Mike Vaughan score on a 30-yard touchdown run.
Thursday, 16 October 2014 00:00
Six North Shore High School athletes competed in the 2014 JCC Maccabi Games and led the New York Delegation to victory, winning gold. The students included Jacob Abramowitz, Brett Bennett, Drew Jacklin, Ben Lerner, Josh Mandell, and Ben Saltzman. The Maccabi Games is a week-long Olympic tournament for Jewish teenage athletes, ages 14-16 years old. It is held in numerous venues across the United States.
Bennett proudly said, “Competing in the Maccabi Games was a unique and thrilling experience for me. It not only was a highly competitive basketball tournament, but it also emphasized the importance of building strong values such as good sportsmanship, leadership, team unity, compassion and respect.
This, for me, was an experience of a lifetime!”