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.”
Thursday, 02 October 2014 00:00
The Brady Brothers may only be 15, but they are already making a name for themselves. Sea Cliff twins Dylan and Cody Brady are determined to make their mark on the music industry and follow through with their number one passion. The North Shore High School juniors spent their entire summer working on their EP, You + Me, which was released last month on iTunes, and Dylan has also been pegged for a “Make Your Mark” segment currently airing on the Disney Channel.
The Brady Brothers have music in their blood, and being twins, also feel that collaboration they have as a duo works better than any other band combination they’ve experienced thus far in their careers.
Dylan, who says he has been singing since the day he was born and took up the drums at age 6, notes, “We know each other so well; when we’re on stage, if I want to do something different, I can look at him a certain way and he’ll know what I’m saying.”
Wednesday, 01 October 2014 00:00
In an unusual change of venue, the Glen Cove City Council held its Sept. 23 meeting at the Webb Institute instead of City Hall. Before the meeting, more than 100 residents and the council members were given a tour of the college.
Mayor Reginald Spinello said, “Keith Michel [Webb President] suggested we could use the venue for the city and I thought having a city council meeting there would be an ideal way to show off the city’s precious history. I am hoping that the Holocaust Center will also allow us the opportunity next year.” He added, “There are a few other notable places in Glen Cove to have meetings like this to showcase the city.”
Thursday, 02 October 2014 00:00
The North Shore Schools Women’s Cross-Country team traveled to Canton, New York (a few miles away from Canada) to compete in the SUNY Canton Pre-State Invitational. This will be the location for the upcoming New York State Cross-Country Championship in November. Starting where they left off last season, the Vikings placed first by more than 40 points.
Entering the season, the team had a winning streak of 76-0 in league competition and won six consecutive county championships.
Thursday, 02 October 2014 00:00
The Falcon Pride Athletic Booster Club and a generous group of alumni have hit one out of the park with their assistance in upgrading the high school softball field.
Throughout the process, former and current Falcon softball players worked together for a good cause.