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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 Glen Cove City Council’s decision to allow amplified music at outdoor cafes at last week’s special meeting was music to the ears of The View Grill manager Frank Venturino. The council voted 6-1 in favor of the decision to allow music from the period of Aug. 12 to Sept. 30. Councilman Efraim Spagnoletti was the only council member to vote no on the resolution.

 

“We just want to have some background entertainment for our patrons while they are at our restaurant,” said Venturino. “We don’t plan to get wild with the music. We just want to support local talent who entertain people with a microphone and maybe an acoustic guitar from 3 to 7 p.m. on Saturdays and Sundays.”

Mayor Reginald Spinello is pictured with students at the School for Language and Communication Development in Glen Cove. The students had prepared a showcase of their projects for a “World Day Celebration.”  They spoke to the guests about the many different cultures and languages spoken around the world. 

 

“The administration, faculty, and staff at the School for Language and Communication Development provide the students with an exceptional education and I am very proud that they are a part of our great city,” said Mayor Spinello. 



Sports

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.

Kristen Gillman earned a come-from-behind two-up victory over Brooke Mackenzie Henderson in the 36-hole championship match of the 2014 U.S. Women’s Amateur Championship, being conducted at the 6,297-yard, par-70 Nassau Country Club in Glen Cove. The final match was held on Sunday, Aug. 10.

 

Gillman, 16, of Austin, Texas, was three down through 26 holes to Henderson, 16, of Canada. But Gillman, a junior at Lake Travis High School, birdied five of the final 10 holes to complete the remarkable rally.


Calendar

Live Music - August 20

Sunset Serenades - August 21

Sea Cliff Beach Concerts - August 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