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, 05 December 2013 00:00
Children at Gribbin Elementary
School prepared for Thanksgiving last week by singing songs, writing what they were thankful for on the table cloths, and making a poster of what they are thankful for.
Friday, 06 December 2013 00:00
Visitors to Nassau County’s Garvies Point Museum and Preserve were transported back in time on Nov. 23 and 24 when the museum held its Annual Thanksgiving Native American Feast. More than 1,000 people attended the two-day event, which showcased the lives of Native Americans. Numerous hands-on activities gave participants the opportunity to try their luck at spear throwing, corn grinding, cooking over an open fire and pottery making.
The feast was the perfect outing for several Cub Scout troops and group home organizations as well as for families from across Long Island. For Sea Cliff siblings Zeke and Uma it was a special day at a place they visit often and have strong ties to. Their grandfather had been one of the museum’s early volunteers. For the Ferrera family of Islip it was a new adventure. Renee Ferrera is a social studies teacher who had taken her classes on trips to Garvies in the past and always enjoyed it.
Thursday, 05 December 2013 00:00
With grit, determination and all-out teamwork, the Friends Academy Boys Varsity Soccer team completed their quest for a third state soccer championship, defeating a tough Lansing High School, 1-0, in the New York Class C State Championships.
Both teams kept the game at a tight 0-0, until 20 minutes into the second half, when a throw-in from senior Patrick Moodhe (Manhasset) connected with the head of senior Jon Nierenberg (Sands Point) for the game’s only goal.
Thursday, 28 November 2013 00:00
It has been an amazing season for the Midget Cardinals team in Glen Cove. Undefeated all season, they are headed to the Super Bowl, where they will be playing against Brentwood for the Championship.
On Sunday, Nov. 17, the Cardinals Midget team won the coin toss and got to play the final playoff game of the season at home. Fans were out and cheering them on as they played Roosevelt - the other undefeated team in the league.