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Walking To Fight Blindness

Glen Head student aims to raise awareness and find a cure

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.”


News

Movie lovers once again have a chance to see first-run films in the theater without having to travel far. Glen Cove Cinemas re-opened last week, with a ribbon-cutting ceremony and free films offered to celebrate the occasion. 

 

“Thanks to all of the support we have here and all of you, Glen Cove is once again open for business,” said Mayor Reginald Spinello at the ceremony, held outside the theater on Thursday, April 10. “We were scheduled to open last week, and there were a few things that weren’t ready...I got a call from the theater operator, Jay Levinson, and he told me that unfortunately, that day Spiderman had the flu,” he joked. “But, Spiderman is well and Glen Cove is well, and we are coming back strong. This is just the beginning. This is going to be so good for Glen Cove and the surrounding communities.”

The Glen Cove Board of Education passed the Alternative Veterans’ Exemption for taxes following last week’s public hearing at Robert M. Finley Middle School, to the appreciation of the veterans in attendance.

 

Several dozen vets arrived promptly at 6 p.m. at the middle school to express their support for the tax exemption. Many noted that they get tax breaks from the city and county, but are still left with the ever-growing school tax bill.

 

“We’re having a hard time with our taxes, especially the school tax,” said the first veteran to speak.


Sports

 

Glen Cove High School players, from left, Tajah Garner, Dejon Taylor, Manny Sican, and Ralik Jackson, after the Long Island Colts u18’s team vs. St. Anthony’s at Robert Finley Middle School last week. Touchdown ‘tries’ by Garner, Taylor and Sican.


The third- and fourth-grade Knights took to the road last weekend as they faced off against Jericho early Sunday morning, April 6.  Jericho’s teamwork and hustle brought down the Knights by a final score of 5 – 0.  The early game may have been a factor as the boys started to play better and more like a team as the game went on.  Once again, goalie Tyler Shea played outstanding in goal and was relieved by Christian Maiorano, who did just as well in the second half.  Andrew Guster played solid defense in the loss.


Calendar

Eggstravaganza - April 16

Live Music - April 16

Community Easter Egg Hunt - April 19


Columns

Yellow Margarine And A Pitch For The Ages
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Sustainable LI: Getting Good Things Done
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LI’s ‘Most Prominent Lady In Politics’
Written by Michael A. Miller, mmillercolumn@gmail.com