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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

History will be made on Friday as Nassau Country Club opens its grounds for the U.S. Women’s Amateur Championship, playing host to the tournament which was last played on its greens 100 years ago. The tournament, conducted by the United States Golf Association (USGA), will have 156 women from all over the world competing for the Robert Cox Trophy and the title of national champion, including twin sisters Jennifer and Kristin Coleman, whose grandfather is a member of the club. 

 

For the Coleman sisters, 21, of Rolling Hills Estates, CA, the tournament will almost be like a homecoming: they began playing golf at age 5, and have played Nassau Country Club a number of times over the years while visiting their grandfather, Daniel Coleman, who lives in Glen Cove.

A public hearing was held last week to determine the fate of hookah lounges within the city limits of Glen Cove: it was decided they shall not be allowed. The City Council and Mayor Reginald Spinello voted to ban such establishments, a move that was well received by the majority of people present; only two people expressed opposition to the measure. 

 

“These establishments are becoming rather trendy,” said Mayor Spinello.


Sports

LI-Kick, the co-ed adult kickball league based in Glen Cove, was formed a little over one year ago and is already making a name for itself on the competitive kickball circuit.  On Saturday, July 12, the league sent two teams to McCarren Park in Greenpoint to compete in a national kickball competition sponsored by Brooklyn Kickball. Teams came from as far away as Toronto, Portland and Atlanta. LI-

Kick was the only league from Long Island to participate. 

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.



Calendar

St. Rocco's Feast - July 30

US Women's Amateur Championship - August 1

Historical  Museum Renaming - August 3


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