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
Saturday, 18 October 2014 00:00
A group of like-minded local residents banded together and saved more than 200 area trees from the chopping block — for now.
A state judge ordered Nassau County and the Department of Public Works to stop cutting down trees along South Oyster Bay Road, granting a temporary restraining order to a group of residents spearheading an effort to save the trees.
State Supreme Court Judge Antonio Brandveen scheduled a hearing on Thursday, Oct. 16 for the county to address complaints from residents, in particular a group called Operation STOMP (Save Trees Over More Pavement) founded by Hicksville native Tanya Lukasik.The Public Works department had planned to removed more than 200 30-foot trees in communities ranging from Plainview, Bethpage, Hicksville and Syosset.
Friday, 17 October 2014 00:00
For the past 16 years, Lucia Simon has walked from her home in Hicksville to her job at the Hicksville Public Library. She enjoys her job as a librarian and says that the staff has become like family to her. But for the past three years, Simon and 56 fellow co-workers have been frustrated at what she says is the library’s board refusal to negotiate a fair contract.
“We have had no contract in three years. They refuse to bargain with us. Every time they come back to us it’s not fair,” says Simon.
However, the board of trustees disagree, saying that it has made a “fair offer.”
Thursday, 16 October 2014 08:31
The Girls Varsity soccer team, in honor of Breast Cancer Awareness Month, wore pink uniforms and pink socks in their game on Oct. 8 against MacArthur whom they defeated 1-0. The girls and boys soccer programs at Hicksville High School are selling pink ribbon car magnets with a soccer ball and HHS on it with the words “Kick Cancer” on the ribbon. All the money raised will go to the Sarah Grace Foundation, which is a local foundation trying to beat pediatric cancer. The players plan to raise $1,000 for this organization
— From Hicksville High School
Thursday, 09 October 2014 08:47
The Mets minor league system is enjoying a rare period of prosperity. For years, it was barren due to trading off high-ceiling players for major leaguers, or neglecting the draft in favor of the free agent market. Since General Manager Sandy Alderson took over, the organization has reversed course and put a much greater emphasis on player development. During his second-to-last season, however, former GM Omar Minaya took a chance and drafted a local catcher, Cam Maron, out of Hicksville High School in the 34th round.