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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

Sea Cliff author Margaret Gay Malone is one of 11 authors whose short stories have been selected for publication in the Tuscany Press Anthology in 2015. 

 

The story, Jimmy’s Gift, centers around a boy whose generosity and selflessness put him in danger on a brutally cold and snowy day. Malone says it is based on a true story after reading a blurb in Reader’s Digest a few years ago about a 12-year-old boy who walked through the snow to help deliver food baskets to those in need; and it turned out that his family’s name was also on the list of those in need of help in the community.

Members of the Glen Cove Boys & Girls Club and their families will be treated to a scrumptious Thanksgiving meal on Tuesday, Nov. 25, an event that has become an annual tradition for local families. 

 

This will be the 14th year that Andrea Correale, the president of Elegant Affairs Caterers, has donated this festive dinner, which in the past has served more 250 adults and children with a full turkey with all the trimmings followed by the always-fun ice cream bar. 

 

I can’t even believe it’s been 14 years,” says Correale. “And so many of the same people come back year after year.”


Sports

The Glen Cove High School girls basketball team was invited to participate in the prestigious KSA Holiday Basketball Tournament that will be held in Orlando, FL, this December. The tournament brings to the court teams from all over the United States that would otherwise not be competing. It is held in the finest professional and amateur athletic venues around the nation with teams seeded into brackets that will provide an appropriate level of competition. 

The North Shore Women’s Cross Country Team won the Nassau County Class I Championship for the eighth consecutive year. They will be competing in the State Qualifier Competition at Bethpage State Park this month.


Calendar

Annual Shop Glen Cove Showcase - November 19

Native American Feast - November 22-23

NSHS Fall Musical - November 21-22 


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