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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

If you missed the 6th annual champagne party at Coe Hall in Planting Fields, put it on your calendar for next year, because this is the party of the summer. A total of 175 guests attended, many in costume, a new addition to the popular event. The always ebullient Henry Joyce, executive director of Planting Fields Foundation, greeted his guests with his date, Daphne, a 3-month-old long-haired Dachshund, who is a companion for his Great Dane, Lucy.

“This is a splendid event to celebrate Coe Hall and Planting Fields; everything looks so wonderful in the summer,” said Joyce. “The gardens are glorious and we have a new exhibition to celebrate and it’s just so lovely to be out here in these gardens.”

The Mayor’s Annual Snapper Derby had plenty of kids, fish and fun on the Pryibil Beach Pier in Glen Cove this past Saturday. On the pier were lots of parents and children fishing for prizes. Below the pier the snappers in the water were only too happy to cooperate with the children trying to catch them. For a while it looked like the children were “catching” and not fishing.


Sports

The Long Island Council on Alcoholism and Drug Dependence (LICADD) is holding its 34th Annual R. Brinkley Smithers Golf Invitational, a charity tournament, on Monday, Sept. 22, at The Creek and Piping Rock Clubs in Locust Valley.

This year, LICADD will have Kristin Thorne, Emmy Award Winning WABC-TV news reporter and personality joining them as Emcee and Auctioneer. The live auction boasts playing opportunities at some of the country’s top golf courses, along with dozens of silent auction and raffle prizes to please the most discriminating of tastes.

All athletes interested in putting their bodies to the ultimate test can hop on over to Theodore Roosevelt Memorial Park in Oyster Bay, which will once again be the site of Long Island’s premiere multisport event – the 27th annual Runner’s Edge - Town of Oyster Bay Triathlon on Saturday, Aug. 23, and the Runner’s Edge – Town of Oyster Bay Junior Triathlon for youngsters ages 8-13 on Sunday, Aug. 24. 

 

The Saturday main event is a “sprint” triathlon, which consists of a half-mile swim in Oyster Bay harbor, a one loop 15 kilometer bike ride over hill and dale through beautiful Oyster Bay, Oyster Bay Cove and Laurel Hollow, and a 5 kilometer run through Mill Neck and Brookville, “up” to Planting Fields Arboretum and “down”to the finish at back at  Roosevelt  Park.


Calendar

Zumba-Thon Fundraiser

Wednesday, Aug. 27

Live Music

Wednesday, Aug. 27

School Supply Program

Saturday, Aug. 30



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