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Joe Domingues Crowned Mr. Spiffy High at Scotch Plains-Fanwood High School Event raised money for the the Pediatric Hydrocephalus Foundation
January 17, 2023 by PHF
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SCOTCH PLAINS/FANWOOD, NJ — Joe Domingues used his walk and his charm to win the coveted title of Mr. Spiffy High at Scotch Plains-Fanwood High School on Friday, Dec. 4, 2022.
Domingues and seven other contestants from the Class of 2023 — Ryan Cawley, Austin Lorenzetti, Matt Nervi, Robert Princepe, Andrew Smith, Guy Varela, and Keith Yeager — competed in the annual event that raises money for charity. The entrants were judged on their fashion (tuxedo) segment, interviews, “talent” contest, and lip-synching. Domingues channeled John Travolta in a Saturday Night Fever-themed dance number in one of the show’s highlights.
The boys also strutted their stuff in production numbers “Country Girl” by Luke Bryan (opening) and a replication of “Pitch Perfect”(closing). The winner received a Wawa gift card and the prestigious title of Mr. Spiffy High. More importantly, the money raised by the event will benefit the Pediatric Hydrocephalus Foundation.
“This has been such a long tradition at Scotch Plains-Fanwood, and I’m just blessed to win it,” Domingues told TAPintoSPF.
What was the key to his victory?
“I’d say my perseverance… but charm does help,” Domingues said. “Between the opening dance, my dance, the lip synch, and the closing dance, I’d say we put in an hour and a half each day.”
This year’s hosts were Ali Murphy and Patrick Watt. Event directors were Jordana Reisberg, Danielle Most, and Bianca Valente. Several teachers were judges for the event, which annually is overseen by Marjorie FitzGibbon, DECA Advisor at Scotch Plains-Fanwood High School.
Previous winners include: Joe Monaco (Class of ’22), JJ Dionisio (Class of 2021), Aidan Murphy (Class of 2020), Paolo Bayotas III (Class of 2019) Joe Varela (Class of 2018), Matt Fox (Class of 2017), Josh Axelrod (Class of 2016), and Billy Wilkins (Class of 2015).
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2-Year-Old from St. Charles, Michigan Annalise Strasel Selected as 2023 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
January 16, 2023 by PHF
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2-Year-Old from St. Charles, Michigan Annalise Strasel Selected as 2023 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
St. Charles, MI- Annalise just turned two on January 6th, her age now matching the amount of life-saving brain surgeries Annalise has survived. Annalise was born with Hydrocephalus, an incurable brain condition, the number one cause of pediatric brain surgery, which is the only treatment option.
Annalise was diagnosed in-utero and had her first brain surgery at just a couple of days old to place a shunt in her brain, a medical device that helps move and drain the excess cerebral spinal fluid from the brain. Because of an infection soon after, Annalise had her second brain surgery, where the first shunt system was replaced with another. The shunt has one of the highest failure rates of any medical device.
Annalise was selected as one of two children to serve as this year’s “National Ambassador of Hydrocephalus Awareness”, for the Pediatric Hydrocephalus Foundation, to help raise the level of awareness and education about Hydrocephalus in the United States. Annalise, whose family lives in St. Charles, Michigan, will represent the girls, while 11-year-old Aiden Smith, also from Michigan, will represent the boys.
Annalise enjoys being read books. She loves anything electronic. She loves video calling family and playing with Fisher Price Little People. Last summer she was able to ride her “neigh” as she calls him for occupational therapy. She adores any animal, but mainly horses and dogs.
Annalise’s Mom Nicole shared her thoughts about her daughter being named the National Ambassador of Awareness for the Hydrocephalus Community; ” It is an absolute honor for Annalise to be chosen. We are so excited for this opportunity.
As Annalise’s mom, I am always advocating for her and her condition with hydrocephalus. Our hopes are to raise awareness for hydrocephalus as we didn’t know the condition existed until Annalise was diagnosed.”
2023: National Ambassadors of Hydrocephalus Awareness
November 25, 2022 by PHF
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The PHF is looking for one boy and one girl to serve as our National Spokesperson for our 2023 National Hydrocephalus Awareness Campaign.
Our two National Ambassadors will be featured in marketing and promotional materials all through the new year, and especially during September 2023 for National Hydrocephalus Awareness Month.
We will select ONE boy and ONE girl from all entries received.
👉 Read these rules carefully!
⓵ Submit one picture of your nominee*, between the ages of newborn to 19 years old, with their name, D.O.B., and location. (By submitting a picture, you authorize the PHF to use the picture for promotional purposes).
NOTE: Failure to comply with Rule #1 will disqualify that entry.
⓶ Only one entry per child will be accepted. Siblings with Hydrocephalus can be entered separately.
⓷ PHF Board of Directors & State Chapter Directors are eligible to participate and enter their child.
⓸ Past winners are NOT eligible to participate.
⓹ All entries will be featured on the PHF website & Facebook.
TO ENTER:
EMAIL your entry to mike@hydrocephaluskids.org (Entries sent ANY other way will NOT be accepted or acknowledged).
Contest ends December 31st, 2022 & both winners will be announced on Monday, January 2nd, 2023 in the evening via LIVE video announcement.
Check out the picture galleries of everyone who has been entered:
New candle businesses sheds light on daughter’s big challenge: ‘She really wants me to succeed’
September 5, 2022 by PHF
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STATEN ISLAND, N.Y. — When Micki Lee, 47, was pregnant with her second daughter, she learned at her 20 week sonogram appointment that her unborn child had hydrocephalus or fluid on her brain.
“I didn’t know what that meant at the time, so further testing was done. … I followed up with two other opinions, and they both came back saying she would need to be ‘shunted’ when she was born,” recalled Lee, an Arrochar resident.
Hydrocephalus is a condition in which abnormally widened cerebral spaces in the brain inhibit the normal flow of cerebrospinal fluid. The process of shunting involves inserting catheters to drain excess accumulation of cerebrospinal fluid from the brain’s ventricles.
“Thankfully, she had an amazing neurosurgeon, who watched her closely,” recalled Lee of her daughter’s first surgery at 7 months old.
Her daughter, Melody Thorne, has had four subsequent surgeries — including one in Jan. 2020 — to ease the pressure on her brain.
She is now 10 years old. And is determined to bring awareness to this rare disease.
“She is a strong girl and wants to spread awareness about hydrocephalus. She describes her condition by telling people, ‘My brain doesn’t work like yours so my doctor has to fix it sometimes,’” said Lee.
RAISING AWARENESS
Because there’s no cure for hydrocephalus, Lee has spent many years thinking of different ways to raise awareness of the disease.
Recently, Lee remembered she had a talent for candle-making. Some years ago Lee used to make homemade all-natural soy candles as gifts for family and friends — many of whom would offer to pay for more because they were so fond of her products.
For this reason, Lee created Solstice Media Corp., a homemade candle and wax melt business, in March 2022. A portion of the proceeds are donated to the Pediatric Hydrocephalus Foundation, a non-profit located in Woodbridge, N.J.
“I hand-make and pour all the candle wax melts that I sell. I use natural soy wax for the wax melts and liquid color and fragrance scent,” said Lee.
She hopes her contribution to the foundation will one day lead to a cure.
“By receiving donations, the Pediatric Hydrocephalus Foundation is able to send funds to find a cure, [and] a rhyme or a reason for why children are born with this disease. At this time, we do know that head injuries can cause hydrocephalus due to swelling, what we don’t know for sure, is in the womb what causes this condition,” she said.
ABOUT THE CANDLES
In addition to raising awareness, Lee sees the business venture as bonding experience with her daughter. And she makes sure her daughter is part of the creative process.
“My daughter, Melody, plays a big role in choosing what scents and shapes I make,” said Lee. “She’ll tell me what color and what scent to get. For example, I just made little Christmas trees just to see how they look, so I know how to package them. And I said to her, ‘What scent should I get?’ And she said, ‘Let’s do peach.’ So we made peach green Christmas trees.’”
Lee and her daughter create and make all-natural soy wax melts in various shapes and sizes.
“Shapes I currently have available are awareness ribbons, sugar cookies, mini muffin, small squares, large squares, clam shells and magic unicorn (Melody blessed the mold with magic powers so all wax melts made with it will be magic). The scents I currently have available are vanilla, strawberry, eucalyptus and cotton candy,” said Lee.
Popular items are “strawberry love jars,” which contain white, red and pink hearts, as well as small jars with the word “love” and hearts on them. There’s also light blue ribbon melts in jars for pediatric hydrocephalus awareness. Lee noted she can make customized awareness wax melt ribbons for any cause.
Lee said she will be adding natural soap made from oatmeal, shea butter and goats milk to the inventory in the coming weeks.
“My favorite part of the job is having my daughter assist with the creative side of the business. She really wants me to succeed and raise awareness for her condition,” said Lee.
WHERE TO BUY
Lee sells her products at Lo’Kel-Li Vendor Market in the Staten Island Mall, New Springville. And while there, she creates awareness about hydrocephalus. She also takes orders online.
UPCOMING AWARENESS EVENTS
Lee and her family — which also consists of her older daughter, Alexis, and husband, Clarence Thorne — try to raise awareness of hydrocephalus by taking part in local events. Lee will take part in the 14th annual Pediatric Hydrocephalus Foundation walk on Sept. 10, 2022 in Edison, N.J.
And on Sept. 17, Lee will be holding her first fundraising event — which she plans to continue annually — to raise money for the Pediatric Hydrocephalus Foundation.
“We will have music, raffles and live performances. If anyone would like to donate items for raffles or food for this event they can reach me at solsticemediacorp@gmail.com,” she said, noting the event will take place at the Swedish Football Club, 725 65th St. Brooklyn.
For more information on the condition, click here.
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10-Year-Old Isaiah Donaldson Selected as 2022 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
January 10, 2022 by PHF
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10-Year-Old Isaiah Donaldson Selected as 2022 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
It has been nearly 11 years since our lives changed forever. We were so excited, on our way to find out if we would be blessed with a boy or girl. Our biggest concern was the name. I remember it just like a movie, sitting in the office and finding out that we are having a BOY!!! And then the SILENCE it seemed to last forever….. the doctor said something isn’t normal. From that point on all I remember is hearing the word HYDROCEPHALUS and that we needed to be seen for more tests immediately. I knew that hydrocephalus was “water on the brain” but that was it.
I remember sitting in the parking lot of the office crying hysterically in my husband’s arms. Within the next few days we had an MRI done at Nationwide Children’s Hospital. This was the worst day of my life. The neurosurgeon said that our child had a very severe case, quite possible the worst he had ever seen. He told Steve and I that our son would NEVER WALK TALK OR COMMUNICATE in anyway, we would be changing diapers for the rest of our lives. He suggested that we “just try again” Of course that was never an option!! And we never saw that doctor again.
4 months later we were blessed with the most precious little boy in the entire world, our sweet Isaiah. About 2 months before he was born I had a dream that I was holding a beautiful baby boy in my arms. He had curly dark hair and the most amazing blue grey eyes. In my dream I knew his name was Isaiah….which means God is salvation. I am BLESSED to have been chosen to be Isaiah’s mommy and thank God every day that he was given to me.
Isaiah spent 45 days in the NICU. He had a VP shunt placed when he was just 9 days old. He still has his original shunt. He has never had a replacement or revision. We continue to have routine MRIs and monitor closely. We recently learned that his shunt is no longer in its original placement position and he has slit like ventricles. We know that this can lead to another brain surgery, and another and another. And we NEED A CURE!
Isaiah loves Thomas the Train and video games. He is an amazingly creative artist, who loves to make his own Marvel Mash Ups. He always has a smile on his face and is the best big brother. He is rocking out 5th grade and even made the Honor Roll. Isaiah is super excited and honored to be the 2022 Hydrocephalus Ambassador and can’t wait to help spreading awareness. He hopes that he can share his experience and help other kids, showing them how to be brave and to never ever doubt your abilities.
