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.”
Friday, 17 May 2013 00:00
The students at St. Paul the Apostle Preschool in Brookville displayed their masterpieces at the ninth annual Preschool Art Show and Auction Fundraiser. Each child created three pieces of artwork based on famous art by Monet, O’Keeffe, Haring, Pollock and more. The Parish hall was transformed into an art gallery and the proud students eagerly lead their parents and special guests through the display. Guests sipped punch and sampled appetizers and desserts while reflecting upon the school year and enjoying good company. St. Paul the Apostle Preschool is located on Route 107 in Brookville. For information about its preschool programs call 935-4127.
Saturday, 18 May 2013 00:00
An emergency addendum to hire a temporary substitute principal at Glen Cove High School was included on the agenda at last week’s board of education meeting.
Effective May 7, Roseann Cirnigliaro has taken over for Dr. Joseph Hinton, who will be out, due to illness, for the remainder of the school year. The board voted 7-0 to accept the recommendation to hire her for the position through June.
Friday, 17 May 2013 00:00
Rob Kormoski Junior Baseball & Softball League of Glen Cove will hold Glen Cove Mayor’s Trophy Team tryouts for the 2013 season on Sunday, May 19 at Campanella field. Eligible birth dates follow.
• 14U* (5/1/1998-4/30/1999) 2:-3:30 p.m.
Friday, 17 May 2013 00:00
The third and fourth grade ‘Wee Knights’ took a road trip this week and played a determined Lindenhurst team. With a beautiful beach backdrop and on a new turf field, Glen Cove lost a tough one 7 – 3. Goal scorers for Glen Cove were Eammon Doyle with two and Will Feldmann with one. There were several positives to take away from this loss. The first is that the Knights came out from the first whistle and played tough trading goals with Lindenhurst despite playing with a smaller squad then usual due to prior commitments. Secondly, the Knights played solid defense. The players are using their lacrosse sticks to disrupt the other team, which is making the other team put the ball on the ground. Kelly Larkin, Daniel McFadden, Jaden Thom and Dominick Williams did a great job on defense.