Friday, 23 May 2014 00:00
This November, Hicksville resident Marlo Signoracci will head to Florida for Ironman, a demanding, long-distance triathlon that includes biking, running and swimming. Here, she shares her story as she prepares for one of the most physically challenging athletic events out there.
Keep your fears to yourself but share your courage with others.
More than 22,000 athletes compete in Ironman events throughout North America each year. Many of those triathletes are participating in an Ironman as a result of being touched by something bigger than themselves, whether it was a battle with cancer, the loss of a loved one or countless other reasons as to why they have chosen to compete. I have chosen to race Ironman Florida to help build awareness for the Children’s Tumor Foundation.
The Children’s Tumor Foundation is a not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain.
NF affects one in every 3,000 people, more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined. The Children’s Tumor Foundation funds critical research into neurofibromatosis. In addition to benefiting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community.
I am dedicating my fundraising efforts to my CTF hero Julia Perfetti. Here is just a small bit of her story...
Eight years ago the Perfetti family’s life changed drastically when their beautiful girl was diagnosed with NF. Julia was just a tiny girl, about to turn 4 years old. The facts of NF— it’s progressive, unpredictable, affects each individual differently, has no cure or treatments, causes tumors to grow throughout and on the body— left them feeling helpless, shocked and with a cloud of grief that has yet to pass. After some time passed, their brains tried to digest these facts, their family tried to help them cope while grieving themselves and when they went public, the community, friends, and co-workers surrounded them with support that they are forever grateful for and couldn’t do without.
Within the realm of what NF can do to a child, they are fortunate that Julia’s case has been mild. However even a mild case of NF affects their daily life. Julia suffers from migraine headaches that at times make her sick and Julia’s nerves signal out of control causing her to itch herself until she’s red and scratched. Julia has behavior, learning and speech issues; all caused by this neurological disorder that change every cell in your body. NF also causes Julia to have frequent stomach aches, NF is associated with pain, although researchers aren’t sure why. Although they make every effort to live a normal life and give all four of their children the innocence childhood is supposed to have, the truth is their daily life is only as good as Julia is doing. If they are waiting for MRI results or Julia hasn’t been feeling well, or something comes up at a doctor appointment, their lives revolve around NF and helpless isn’t even a good enough word to describe that feeling. The carefree childhood that I have been fortunate enough to have experienced has been taken from Julia. On the days when Julia’s not feeling well the anxiety can be overwhelming and it takes all of their energy to make it through until the next day when we see if Julia feels better. Julia has become so used to being a patient she never complains when she can’t eat for 15 hours because of an MRI or throws up for hours after, she holds so still during blood work no one needs to hold her. Her strength amazes me, because I know she will need to continue to be a strong girl a hero.
All birthdays are miracles, and every birthday Julia has where she is free of medical treatments is truly a gift of a time. Puberty is quickly approaching and is a time when NF accelerates. Drug trials cost 12 to 25 thousand dollars— our team has raised enough to fund at least 4 drugs to be tried for NF a disorder that has no treatments, yet. The Perfetti’s are determined to change the quality of Julia’s life.
In order to raise awareness and funds to support CTF’s research, I will be completing my first Ironman in Panama City, Florida on November 1, 2014. For those of you who do not know, an Ironman consists of a 2.4 mile swim, 112 mile bike ride and a 26.2 run for a total of 140.6 Miles. Yes, one right after another and yes all in one day. On this journey, I am pushing my physical and mental strengths to the limit, however, this journey is nothing compared to what those living with NF and their families face on a daily basis.
Please join me in supporting NF research by helping me to raise awareness for the Children’s Tumor Foundation. Every little bit helps.
All donations are tax deductible. You can mail your donation check made out to The Children’s Tumor Foundation to Marlo Signoracci; 429 Duffy Avenue; Hicksville, NY 11801 or visit my website at http://tinyurl.com/lvwdfs8
Thursday, 31 July 2014 09:59
Superintendent Maureen Bright and the Hicksville School District are parting ways, a year earlier than originally planned.
At a Board of Education meeting May 20, Bright announced that she would not be renewing her contract when it expired at the end of the 2014-15 school year. However, a notice posted last week on the Hicksville School District website stated that she is leaving her position July 31, 2014.
Wednesday, 30 July 2014 00:00Jaclynn Demas always loved film and television. She dreamed of having a hand in its creative process. and wanted to shape the moving image. The East Williston resident’s obsession paid off after taking home a Daytime Creative Arts Emmy Award for Outstanding Pre-School Children’s Animated Program last month as producer of PBS KIDS’ Peg + Cat.
“I’ve loved TV and was a movie buff since I was a little kid,” she said. “All I’ve ever wanted to do was make films. I was just upset at how things were made. When I got older, I took a lot of courses in TV and video production.”
Thursday, 31 July 2014 10:08
Cantiague Park Senior Men’s Golf League had its fourth tournament on Thursday, July 17. We had 34 golfers and only three who scored under 40. Low overall score was won by Charlie Hong with an impressive 34. Joe Sander scored a solid 49 and won low overall net with a 31.
Competition on the nine-hole course is divided into two divisions. Flight A is for players with a handicap of 13 or lower. Flight B is for players with a handicap of 14 or more. The league is a 100% handicap league. Any man 55 years or older is eligible for membership. We have many openings for this year, and you can sign up anytime throughout the the season. The league meets every Thursday at 7:30 a.m., but the formal tournament dates are only the first and third Thursday of the month through late October. We will have a final luncheon with prizes on our last meeting.
Thursday, 31 July 2014 00:00
The Michael Magro Foundation is once again partnering with The Mastermind Unit to put on the annual Soccer For A Cause tournament. The event, which raises money for the Michael Magro Foundation, will take place at the Kevin Kolm Memorial Field in Hicksville this Saturday.
The soccer tournament is an enjoyable event, which offers participants the chance to enter in the competitive game. In years past, approximately 20 soccer teams from the tri-state area have played. All participants will be able to enjoy music and entertainment while supporting a worthy cause. Each registrant will receive a special event t-shirt. Teams can register online at http://www.mastermindunit.com/ with a $500 donation.