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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 Village of Sea Cliff took the time to show area residents that July 4 is not just about BBQs and fireworks, but about patriotism and freedom.  On the morning of July 4, under overcast skies, 300 or so people gathered in Sea Cliff to celebrate Independence Day. 

 

The festivities started with Mayor Bruce Kennedy ringing the Liberty Bell on the green in front of the library. This was followed by Sara Garry and Ruben Shonik playing “Yankee Doodle” on the flute and drum with, Boy Scout Troop 43 marching behind them to  present the colors and lead in the Pledge of Allegiance.  Lesley Pryde Haley sang “The Star Spangled Banner” next. 

Downtown Glen Cove was abuzz during last Thursday evening’s bi-monthly car meet, Autostrade Glen Cove.

 

This event, sponsored by Martino Auto Concepts of Glen Cove, is held at the corner of Glen and School Streets. More than 125 vehicles showed up and gave a $10 donation to the Glen Cove Volunteer Fire Department as the required entrance fee. 


Sports

Three members of the Glen Cove Big Red Boys Lacrosse Team were honored at the Nassau County Lacrosse Coaches Association Dinner on June 11.

Pictured are Ryan Perkins, Sean Peet and  Phil Grella, who were awarded for both their play on the field and their work in the classroom. Ryan was named to the All-County Honorable Mention Team, Sean and Phil were named to the All-Conference Team. All three also received Academic All-Conference standing for their work in the classroom.


Glen Cove High School recently held its first-ever Athletics Wall of Fame Induction ceremony in the school’s athletic wing. 

 

Wall of Fame inductees are varsity players who have been selected as All-County in their respective sport. This year, 12 Glen Cove students were named All-County, earning themselves an eight-by-ten photograph mounted and framed on the storied wall near the gymnasium. The Wall of Fame dates back to its first inductee in 1974.


Calendar

Wine Tasting - July 18

Morgan Park Summer Music - July 19

Blood Drive - July 22


Columns

1959: The Year The Music Stopped Playing
Written by Michael A. Miller, mmillercolumn@gmail.com

The Eccentric Heiress Of ‘Empty Mansions’
Written by Mike Barry, MFBarry@optonline.net

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