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.”
Saturday, 13 September 2014 00:00
Known for her love of exotic cars, sophisticated leather fashions and a penchant for giving back, part-time Long Islander Joanne Del Prete-Rosten can often be seen driving around town in her Lamborghini LP550, which is decked out in the colors of her clothing company, Canto NYC. On Sunday, Sept. 14, those interested in getting a closer look at the car that has become somewhat of a local celebrity can see it on display with hundreds of exotic cars at the sixth annual Gold Coast Concours/Bimmerstock event, presented by Martino
Auto Concepts and benefiting the Diabetes Research Institute. Rain or shine, the event will take place in downtown Glen Cove from 11 a.m. to 4 p.m. and is free to spectators. For those wanting to register a car, the fee is $20 in advance and $25 on the day of the event.
Friday, 12 September 2014 00:00
As a fitness coach and a mother, Melissa Monteforte of Locust Valley knows how important it is to stay healthy, and how difficult it can be for women to make themselves, and their health, a priority. Wanting to help women take charge and feel more in control, she organized the Fit & Healthy Mamas Annual 5K run, now in its third year, which will take place on
Saturday, Sept. 13 from 8:30 a.m. to noon at Eisenhower Park in East Meadow.
“I felt like running was the best outlet when I became a mother; it’s such a great way to get fit and feel healthy and I wanted to share that with other moms,” says Monteforte, 31. “I wanted women to feel celebrated, no matter their fitness level, and to put their health first.”
Thursday, 11 September 2014 00:00
At the end of July, children from across Long Island traveled to Pierce Country Day Camp in Roslyn to make a big splash for disaster relief. Two events hosted by the American Red Cross gave young swimmers the opportunity to put their skills to the test, all while raising money to support their local Red Cross.
In late July, hundreds of children came out to the venerable Pierce County Day Camp to swim laps in support of the Red Cross. The children raised a collective amount of over $11,000.
Thursday, 11 September 2014 00:00
Glen Cove High School graduate and former All-County basketball star Garen Spendjian has proven that hard work and dedication to a sport you love can pay off.
The Armenian National Basketball Team player will soon begin his professional basketball career with the El Shams basketball team of Cairo, Egypt. The 6’5” Spendjian will play both the power forward and small forward positions for El Shams of the Egyptian Super League.