According to Glen Cove mom Laura Perfetti, there are 25 drug trials going on now for various drugs to treat the affliction causing tumors to grow on her 9-year-old daughter Julia’s nerve tissue. Tenf years ago, there were none.
That means the tireless efforts of families like the Perfettis – to raise funds for research in the fight against neurofibromatosis (NF) – are starting to show results. Across the country, concerned parents and the supporters behind them have been putting on things like the annual carnival in Glen Cove to keep hope alive.
This Saturday, the money spent for games, food and raffles will again go to the Children’s Tumor Foundation, earmarked for research that can ease the symptoms of NF. Laura described the affliction, “The cells in [Julia’s] body move too fast. Therefore, tumors grow, sometimes right on nerves. So it is difficult or impossible to operate. Or, even after an operation, new tumors grow back… It covers your whole body. There is no part you can say, ‘it’s probably OK.’ You always have to wonder and worry.”
So far Julia’s family has personally raised $200,000 for the Children’s Tumor Foundation. They have to pay to do a drug trial, and each one so far has cost around $25,000. So, the fundraising is very necessary. Regarding the research, she said, “We are hoping they can come up with a cocktail of drugs to prevent the tumors from growing.”
The research and fundraising have led to some relief. They have discovered a treatment that at least alleviates the extreme pain that young Julia has been braving.
But, a search for more of a treatment is getting urgent. “We’re really hoping for the ‘cocktail’ in the next few years because everything seems to accelerate with puberty,” shared Laura. “Julia is turning nine now.”
Again, for 2011, Saturday’s carnival will be a big treat for anyone who wants to help the Children’s Tumor Foundation.
Local businesses donate items for fun and really great raffle prizes like massages, Sesame Place passes, a camera, Gamin Ride gift cards and more. Representatives from the Islanders are coming with vouchers for free tickets to games and a bounce house. The Glen Cove Fire Department is bringing a firetruck and the GCPD are bringing a police car for kids to check out. Favorite attractions are back, like: the dunk tank; cotton candy, burgers and hot dogs; Glen Cove Beer Distributors is donating a very generous supply of water; Rita’s is bringing over ices; pony rides from 1 to 2 p.m.; sand art and more.
Everything at the carnival costs $1 and a family can come for an unlimited pass for $100.
To make a donation, people can drop a check at 57 Sugar Maple Lane, call Laura at 641-4103 or to learn more about NF, go to www.teamjuliabug.com.
On the evening of July 6, an air of change filled the room as Richard Maccarone was elected Glen Cove School District’s newest board president. After receiving five YES votes and one abstention, Maccarone was officially sworn in.
Also sworn in that evening was Superintendent Dr. Joseph Laria, Vice President David Huggins, and Trustees Joel Sunshine (re-elected) and Barrie Dratch (newly-elected).
It is with great sadness that the staff of the Record Pilot reports the loss of City of Glen Cove historian, active resident and former employee Daniel E. Russell. His photos have run on this front page for decades, commemorating the important events and good times that Glen Covers have shared over the years.
Landmark legislation to make same-sex marriage legal in New York State was signed into law on June 24, making New York the sixth state to legalize same-sex marriage.
On June 15, the New York State Assembly voted in favor of the Marriage Equality Act, 80 to 63, and on June 24, the New York State Senate voted in favor of this bill, 33 to 29. Governor Cuomo signed the Marriage Equality Act into law on Friday evening, June 24 and this legislation will go into effect on Sunday, July 24.
There has been a lot going on at the Glen Head-Glenwood Business Association. The GHGWBA meets monthly for cocktails, dinner and a presentation at the Glen Head American Legion Post #336 building. Between meetings, the group is very active in its mission of promoting the interests of local business, encouraging people to shop locally, and making the community a better place to live and work.
Marty Napoleon, featured jazz pianist and resident of the Regency at Glen Cove, recently performed a series of jazz classics with bassist Bill Crow and drummer Ray Mosca for friends, family and invited guests at the Regency. The trio’s performance, titled Music from the Heart, included the classics Baby Won’t You Please Come Home, The Girl from Ipanema and Prelude to a Kiss, and was met with a standing ovation by the more than 150 guests in attendance.
The City of Glen Cove Planning Board held a public hearing Tuesday night at City Hall to consider an application for a special use and site plan to redevelop the property at Village Square. Glen Cove residents and business owners voiced their opinions on the Glen Cove Piazza project.
The plan is to redevelop the property into four buildings that are four- and five-stories high, consisting of 142 multi-family residential apartments and approximately 27,000 square feet of retail space. An additional 107 parking spaces will be added in underground garages, with intent to use the existing garages that are currently underutilized.
The Glenwood power plant is a familiar sight to anyone driving along the water, but what might not come to mind is how much it contributes to local taxes. If a plan proposed this past week to phase out the plant goes through, North Shore Schools Board would be looking at a 10 percent loss in revenue.
“We are facing a very serious situation,” North Shore Schools Board of Education President Dr. Igor Webb told the Record Pilot. “We do not yet have a full sense of the issues that might be involved. We just received this information last week… We are just beginning to try to figure out a strategy but the numbers are scary.”
Mayor Ralph V. Suozzi is kicking off his 2011 campaign for re-election with a dinner party at the Glen Cove Mansion on Monday, June 20 at 6 p.m. Running with Mayor Suozzi are his Glen Cove City Council team, including incumbent city council members: YMCA of Long Island CEO Mike Famiglietti, local insurance business owner Nick DiLeo, decorated veteran and former EMS chief Tony Jimenez, trial attorney Tim Tenke, and financial strategist Sean Dwyer. Council member Delia DeRiggi-Whitton is not seeking re-election. Longtime Glen Cove resident Martin Carmody, a design engineer, has been selected to join Suozzi’s team.
Robert Germino (former captain in the United States Marine Corps, Iraq veteran, board member of the not-for-profit Semper4Soldiers, and 2010 candidate for State Assembly District 13) is the Republican candidate for Nassau County Legislature. The Nassau County Republican Committee nominated him for the current County Legislative District 18 that includes Glen Cove, Sea Cliff, Bayville, Locust Valley, Brookville, Glen Head, Greenvale, and Jericho.
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