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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

It was the second annual goal setting workshop at Glen Cove High School on Tuesday, Oct. 14 and both the board of education and the public came up with some sound ideas for the district. School Superintendent Maria Rianna presented a slide show of four main areas that are the focus of district goals.

 

“We began this process last year and these goals are representative of what the community wanted to see,” said Rianna.

Glen Cove residents may see a 1.64 percent increase in the tax levy next year, the amount proposed at last week’s public hearing. Mayor Reginald Spinello and the Glen Cove City Council held an initial reading of the proposed budget for 2015, and will take final vote on Tuesday, Oct. 28, at the next city council meeting.

 

“It’s very easy for a first time mayor to raise the taxes and blame it on a prior administration, and that is not what I am doing,” said Mayor Spinello. “In the past three administrations there were budgets with increases of  almost 28 percent to down to 12 percent, but it’s a different time now...I think that the residents are certainly going to feel relief. I put together a budget...that I believe is fair and reasonable and a good budget.”


Sports

The Town of Oyster Bay, in conjunction with the New York Rangers, will once again host a special Try Hockey for Free Program on Sunday morning, Oct. 26 from 8 a.m. to noon at ithe Ice Skating Center located in Bethpage Community Park, 1000 Stewart Ave. 

 

The event will allow youngsters a unique opportunity to sample the sport of ice hockey. Four morning sessions will be available. Session times are 8 to 9 a.m., 9 to 10 a.m., 10 to 11 a.m. and 11 a.m. to noon.

On Thursday, Oct. 2, North Shore High School quarterback Michael Floccari shattered a school record and tied a Long Island record for the most touchdown passes in a game. This accomplishment ties him with E.J. Clark from Seaford High School (1977) and Joe Capobianco form Lawrence High school (2011). 


Calendar

Harvest Square Dance - October 24

Fall Festival - Octobner 24 - 25

Peace, Politics and Projectiles - October 26


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