The PHF is looking for one boy and one girl to serve as our National Spokesperson for our 2020 National Hydrocephalus Awareness Campaign.

Our two National Ambassadors will be featured in marketing and promotional materials all through the year ending in September 2020 with National Hydrocephalus Awareness Month & our National Conference in Washington DC.

The National Ambassadors & their families will also receive a two night complimentary stay @ the Embassy Suites Hotel for the 2020 PHF Issues & Action Hydrocephalus Conference in Washington, DC on Thursday August 20th & Friday August 21st.

We will select ONE boy and ONE girl from all entries received. Read the rules carefully!

1) 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.

2) Only one entry per child will be accepted. Siblings with Hydrocephalus can be entered separately.

3A) PHF Board of Directors & State Chapter Directors are eligible to participate and enter their child.

3B) Past winners are NOT eligible to participate.

4) All entries will be featured on the PHF website & Facebook.

5) IMPORTANT: Please participate in this campaign only if you are able to commit to attending the PHF’s National Hydrocephalus Conference in Washington, DC in August if your entry wins.

TO ENTER:

Contest ends 12/31 & both winners will be announced on Thursday, January 2nd, 2020 in the evening via video announcement.

EMAIL your entries to mike@hydrocephaluskids.org (Entries sent any other way will NOT be accepted or acknowledged).

Check out the picture galleries of everyone who has been entered:

FAIRFIELD — A Quinnipiac University student recently received a $30,000 scholarship named in honor of a Fairfield 6-year-old with an incurable brain condition, according to a news release.

The Pediatric Hydrocephalus Foundation, the largest pediatric-focused hydrocephalus advocacy and research funding provider in the country, announced on Monday that Ashley Dunbar, of Quinnipiac’s Frank H. Netter MD School of Medicine, was the first recipient of the Reagan Sloane Shanley Scholarship.

The scholarship is named for 6-year-old Fairfield resident Reagan Shanley. At 9-months-old, she was diagnosed with hydrocephalus and had two brain surgeries before she reached 18 months.

“Our brave and feisty little girl has inspired us to be a part of the Pediatric Hydrocephalus Foundation,” said a prepared statement from Cindy Shanley, mother of Reagan. Over the last 4 years we’ve raised almost $300,000 for the PHF through the generous donations of family and friends.”

Cindy Shanley said her family decided to created the scholarship in his daughter’s name as an effort to support students and researchers working to find advancements in treated hydrocephalus.

The scholarship Dunbar was awarded will be spread out over three years. She received three $10,000 checks to be used each year. The family said she was “the obvious choice” for the scholarship.

Dunbar was playing against the Yale University’s women’s ice hockey team in a game in the fall of 2013 when she was hit hard from behind and suffered a serious head injury, bringing her hockey career to an end, the news release said.

After her injury, Dunbar created a concussion support group at Quinnipiac and decided to focus on neurological research to understand how the body and brain function, and help support the fight against hydrocephalus.

“Reagan is truly a vivacious individual,” Dunbar said in a prepared statement. “Thank you again to the Shanley family and to the Pediatric Hydrocephalus Foundation for their support and I am honored to have been named a Reagan Sloane Shanley Scholarship recipient.”

Reagan’s parents, Tim and Cindy Shanley, are the Connecticut State Chapter Directors of the Pediatric Hydrocephalus Foundation. They said the continue to remain optimistic that their daughter’s condition will continue to be managed through her current health procedures.

Pediatric Hydrocephalus Foundation is an all-volunteer nonprofit organization intended to educate the community by raising awareness about hydrocephalus. The organization has 30 state chapters and provides support to families, friends and children affected by the incurable brain condition.

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A medical student in Connecticut was awarded a scholarship funded with monies raised by family and friends of a six-year-old Fairfield girl with an incurable brain condition.

The student is Ashley Dunbar at the Frank H. Netter MD School of Medicine at Quinnipiac University.

The Reagan Sloane Shanley Scholarship is named for Reagan Shanley who was diagnosed with hydrocephalus at 9 months and had two brain surgeries before she turned 18 months.

She was treated with an alternative surgery called Endoscopic Third Ventriculostomy to create a bypass for the cerebrospinal fluid in the head and eliminate the need for a surgically implanted medical device called shunt in her brain.

“Our brave and feisty little girl has inspired us to be a part of the Pediatric Hydrocephalus Foundation. Over the last 4 years, we’ve raised almost $300,000 for the PHF through the generous donations of family and friends,” said Cindy Shanley, Reagan’s mother, and the foundation’s Connecticut State Chapter director.

“We’re committed to putting the funds toward supporting students and researchers in their efforts to find advancements in treating hydrocephalus,” said Shanley.

The recipient Ashley Dunbar, in 2013, was injured in a game for the Yale University women’s ice hockey team and suffered a serious head injury, ending her hockey career. Dunbar, of Hillsborough, New Jersey, graduated from the Lawrenceville School.

At college, she started a support group and did neurological research to understand how the body and brain function in order to help support in the fight against hydrocephalus.

She has received the first $10,000 installment of the three-year scholarship.

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An 8-year-old Myrtle Beach girl born with extra fluid in and around her brain is showing she got an extra dose of something else, too: enthusiasm.

“I have to raise awareness about hydrocephalus, which I have,” says Brooklynn Reiter.

The second grader whose parents once feared she’d never walk is now not only a cheerleader who loves art, reading and science classes at Forestbrook Elementary School but also a national ambassador for the Pediatric Hydrocephalus Foundation.

“She’s always happy,” says Brooklynn’s mother, Kristen Reiter. “She has a great imagination.”

This summer, the Reiters will travel to Washington, D.C., where Brooklynn will speak with members of Congress about hydrocephalus. “You have to warn people about something they might not know about,” Brooklynn says.

About one in 1,000 babies is born with hydrocephalus. There’s no cure, and surgery is the only effective treatment. Brooklynn has had eight operations, starting when she was just 3 days old.

Her mother remembers the moment she found out about Brooklynn’s condition. She was about 20 weeks pregnant and had just had an ultrasound, which is a scan that shows how the fetus is doing.

“I knew something was wrong. They said, ‘Hold on. The doctor needs to talk to you.’ Everything the doctor said to me went in one ear and out the other. I knew whatever she was saying wasn’t good, so I blocked it out.”

Reiter’s doctor sent her to MUSC Health in Charleston, which has doctors and nurses who specialize in taking care of mothers and babies during and after complicated pregnancies. That includes neurosurgeon Libby Infinger.

“This is obviously very frightening for the parents,” Infinger says. “We meet with them early so they can get to know the team that will be caring for the baby. We have such good treatment for hydrocephalus these days. Prompt evaluation and intervention let kids grow up and lead very active and productive lives.”

The Reiters also connected with other families with children who have hydrocephalus. “We heard their stories about their children and what they’ve been through. It’s not all that bad.”

Brooklynn spent her first days of life in the Neonatal Intensive Care Unit at MUSC Children’s Health and returned for surgery several times over the next couple of years. Doctors put in a shunt, a tube that draws fluid off the brain and sends it to the stomach. She also had to have surgery on her eyes, her mother says. “There was so much pressure from the fluid buildup when she was little that it hurt the nerves behind her eyes.”

Hydrocephalus also had an effect on Brooklynn’s development. “When she was little, she had some issues,” her mom says. “She had to have physical therapy and occupational therapy. She didn’t walk till she was over 2 years old. That was kind of a scary time.”

But Brooklynn has gone on to show just how well a person with hydrocephalus can do. While she still needs to visit MUSC Children’s Health once a year to make sure she’s not having any more developmental problems, she’s mostly focused on other things – like movies. “My favorite movie is Wreck-It Ralph 2.”

And like a lot of kids, Brooklynn loves video games. “I usually go play on my Nintendo and my iPad when I get home from school.”

She’s looking forward to her August trip to Washington. “I have to give a speech about hydrocephalus.”

That shouldn’t be any problem for a girl who loves to talk, according to her mother. “I know she’ll do great.”

Infinger agrees. “She’s been through a great deal, but you would never know it by looking at her. Brooklynn is poised, she communicates well, and has great insight to her condition. She’ll do a great job of educating others about hydrocephalus and show our nation’s leaders what a full and meaningful life one can have while living with hydrocephalus when it is recognized early and treated.”

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Caleb Wiggs is just like any other five-year-old.

He can be shy around strangers . . . at first.

He loves cheering on his older sisters at basketball games, observing that his mother “is pretty loud.”

And one can’t help but feel Caleb’s joy when he shares a grin.

In fact, Caleb will be sharing that smile – and his story – with millions of people as one of two children who have been selected as this year’s national ambassadors for Hydrocephalus Awareness for Incurable Brain Condition.

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