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.”
Saturday, 01 November 2014 00:00
Despite the national media attention about Ebola in recent weeks, there is one virus that is actually affecting Long Islanders, Enterovirus D68 (EV-D68), with one of the first cases identified in North Hempstead on Sept. 18 and a recent case on Oct. 15 in Suffolk County, which school officials called for the closing of school, as a health precaution.
Dr. Charles Schleien, chairman of the department of pediatrics at Cohen Children’s Medical Center, said that although the enterovirus is still active, cases are dwindling on Long Island. According to Schleien, approximately 500 cases have been reported this season of enterovirus at the center, with two to six patients being admitted per day. “It’s [enterovirus] typically mild and parents should treat it like they would any other cold or viral infection in their child,” said Schleien.
Friday, 31 October 2014 00:00
More than 5,000 carved and lit up Jack-O-Lanterns are being displayed at the Old Westbury Gardens until Nov. 2. People of all ages and abilities can take this easy 15 minute walk and marvel at all the different themed pumpkins carved.
Themes to view include Broadway shows, sports stars, dinosaurs, under sea pumpkins, video game scenes and other ghoulish figures.
More information can be found at www.therise.org.
Thursday, 30 October 2014 00:00
Numerous students, faculty, parents, and community members enthusiastically lined up to kick-off the 10th Annual North Shore Schools Homecoming Parade at Glenwood Landing School. Leading the parade was the American Legion Glenwood Landing Post 336 followed by the NSHS Drum Line directed by David Soto, North Shore Cheerleading team, Board of Education including Superintendent Dr. Edward Melnick, Assistant Superintendent for Instruction Rob Chlebicki, and Assistant Superintendent for Business Olivia Buatsi, the Booster Club, the Viking Foundation, various Parent Organizations, and the Glenwood Landing Fire Department.
Thursday, 23 October 2014 00:00
The Town of Oyster Bay, in conjunction with the New York Rangers, will once again host a special Try Hockey for Free Program on Sunday morning, Oct. 26 from 8 a.m. to noon at ithe Ice Skating Center located in Bethpage Community Park, 1000 Stewart Ave.
The event will allow youngsters a unique opportunity to sample the sport of ice hockey. Four morning sessions will be available. Session times are 8 to 9 a.m., 9 to 10 a.m., 10 to 11 a.m. and 11 a.m. to noon.