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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

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.

This year marks the 35th anniversary of The Sea Cliff Village Museum. Founded in 1979, the museum serves as a place to preserve and publicly display historical items of  past Sea Cliff residents. The museum displays both temporary and permanent collections from the 18th through 20th centuries. Most of the items and artifacts in the museum have been donated by residents of Sea Cliff who want to share them with the rest of the North Shore community. 


Sports

The Glen Cove Junior Lacrosse Club kicked off their 20th season with the third- and fourth-grade boys winning their home opener against Deer Park on a moist and muddy Sunday morning.  

Despite the weather forecast, the boys were determined to play after spending the last three months practicing indoors. It was a hard fought battle with the lead changing several times, but at the end Glen Cove managed to hold on for a 6 – 5 victory.  

Anchoring the victory was goalie Tyler Shea, who stopped several point blank one-on-ones and recorded 13 saves in the game. The offense started slow, but began clicking as the game went on. Providing the firepower was Ryan Houghton with two goals and Micah Stone, Eamon Doyle, Andrew Epifania and Lukasz Dubicki, each adding one.  Epifania and Andrew Bisch each had an assist in the winning effort.

Glen Cove High School hosted the PTSA-sponsored Red vs. Green Games last month, an evening of traditional and non-traditional sporting activities in which students and adults represented their schools of past and present allegiance by donning either red- or green-colored attire. Students of all ages came to their schools the day of the event wearing either red or green. Gribbin and Connolly elementary schools are traditional green schools while Deasy and Landing are red schools. 


Calendar

Kiddie Egg Hunt - April 11

Offbeat Artifacts Sale - April 12 

Glen Cove Eggstravaganza - April 16


Columns

Yellow Margarine And A Pitch For The Ages
Written by Michael A. Miller, mmillercolumn@gmail.com

Sustainable LI: Getting Good Things Done
Written by Mike Barry, MFBarry@optonline.net

LI’s ‘Most Prominent Lady In Politics’
Written by Michael A. Miller, mmillercolumn@gmail.com