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Training For Ironman: Month Five

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

News

You could say Darren Butler has quite the entrepreneurial disposition. The Hicksville resident not only founded a church, but invented a doorstop that does not require screwing any holes into your wall or door. The device simply clamps on to the bottom of any sized door without requiring tools.

“I never envisioned myself as being an inventor,” explained Butler. “I became one by accident and out of frustration.”

After Butler and his wife purchased their home, they wanted to decorate and maintain it.  “We have four children and at the time we wanted to minimize the damage that occurs from doors slamming into walls because as young children do; they have a tendency to aggressively open doors, and as a result the door knob created holes in our wall,” said Butler. “We purchased conventional doorstops so at the very least we could minimize that reality if not eliminate it all together.”

The Hicksville Fire Department hosted the Nassau County Parade and Drill Championships this past Saturday, an event that was entertaining for both guests and participants.

The Motorized Drill competition held in the morning had 16 participating fire departments. The drill included eight events and each racing team was judged based on how fast they completed each event. Events included the Three Man Ladder, Motor Hook and Ladder, Motor Hose, Efficiency, Motor Pump, and Buckets. The Hicksville Hicks came in fifth place and received a trophy.


Sports

Madeline Huffman, a fourth grade student at Our Lady of Mercy School in Hicksville, recently became the New York State Free Throw Champion in the Knights of Columbus Free Throw Competition, 9 Year Old Girls Division at the United States Military Academy, West Point.

Huffman’s journey to the state championship began at her home parish, Our Lady of Mercy Roman Catholic Church in January. The local qualifier was sponsored by the Knights of Columbus Joseph F. Lamb Council #5723. Boys and girls ages 9 through 14 competed, each receiving three warm up shots and 15 free throw attempts.

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.

“I meet my goals and maintain my health. I stay mindful of what is important to me and seek balance in all endeavors. With gratitude, I am fully present to this moment in time.”


Calendar

Hicksville Street Fair

July 20

Blood Drive

July 23

Our Lady Of Mercy Family Festival

July 30 - August 3



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