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  • Fairfield Couple Co-Hosts ZenRide Benefit To Honor Their Little Girl

    October 21, 2017 by  
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    reagandailyvoiceFAIRFIELD, Conn. — ZenRide Spinning Studio and Fairfield residents Cindy and Tim Shanley on Oct. 22 will present the 3rd annual “Biker-Barre” to help fund a cure for hydrocephalus, a brain condition the Shanleys’ little girl lives with every day.

    Located at 869 Post Road, ZenRide will offer a spinning and Bar Method combo class at 3 p.m. After that, participants can stay on for refreshments and a silent auction to benefit the cause.

    All proceeds will go to the all-volunteer Pediatric Hydrocephalus Foundation.

    The Shanleys support the effort to honor their daughter, Reagan — “Rae Rae” to her friends and family — who has hydrocephalus, and to raise both awareness and research dollars.

    The last two Biker-Barre events have raised almost $20,000 each.

    The event’s success allowed the Shanleys to create the Reagan Sloane Shanley Scholarship for applicants interested in neuroscience and/or engineering who have a special interest in better understanding hydrocephalus, cerebral spinal fluid and the brain.

    A $40 donation reserves a bike for the spinning class.

    To register, visit zen-ride.com/reserve.

    To make a donation, visit active.com/donate/phfzenride2017.

    To learn more about hydrocephalus, visit www.HydrocephalusKids.org.
    Source:

    Biker-Barre + Bubbly fund-raiser to raise awareness of pediatric brain condition

    September 11, 2015 by  
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    ZenRide Spinning Studio, 869 Post Road, Fairfield hosts the first annual “Biker-Barre + Bubbly” event on Sunday, Sept. 13, at 4 p.m., to raise awareness for the incurable pediatric brain condition called Hydrocephalus.

    Bar Method of Fairfield is co-sponsoring the event.

    Participants will sweat, sculpt and stretch, then enjoy some bubbly and bites while bidding on silent auction items.

    All proceeds will go directly to The Pediatric Hydrocephalus Foundation (PHF).

    Fairfield resident Cindy Shanley, one of the spin teacher’s at Zen Ride, has a 2-year-old daughter, Reagan Rae Rae” Shanley, who has hydrocephalus. Cindy organized the fund-raiser.

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    Cost is a $40 donations to reserve a bike. Additional donations greatly appreciated.

    To register, visit zen-ride.com/reserve. To donate, visit active.com/donate/phfzenride.

    About Pediatric Hydrocephalus Foundation, Inc.

    The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by raising the level of awareness about hydrocephalus and provides support to families, friends, and children affected by this brain condition.

    The PHF also raises money for and works with the medical community in searching for a cure and additional treatment options for those with hydrocephalus. Additionally, the PHF advocates on behalf of the members of the hydrocephalus community and works with policy makers at the state and federal levels to raise awareness and push for more research and support in the fight against hydrocephalus. All donations are tax-deductible. Visit HydrocephalusKids.org for more information.

    Source:

    Fairfield Spinning Studio Hosts Ride For Rare Childhood Medical Issue

    September 5, 2015 by  
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    reagannews FAIRFIELD, Conn. — ZenRide Spinning Studio in Fairfield will host the first “Biker-Barre” to help fund research for a cure and awareness about a rare and complex childhood medical issue on Sunday, Sept. 13.
    The ride will be at the spinning studio at 869 Post Road in Fairfield beginning at 4 p.m.

    The event raises money for the Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization. Pediatric Hydrocephalus is the build up of spinal fluid in the brain, which can lead to injury or even death if not treated.

    Participants will sweat, sculpt and stretch, then enjoy some bubbly and bites while bidding on silent auction items. All proceeds will go directly to the PHF. Fairfield’s Bar Method is co-hosting the event with ZenRide.

    Fairfield resident Cindy Shanley, a ride instructor at ZenRide, has a young daughter, Reagan, with Pediatric Hydrocephalus. Reagan turns 3 years old on Oct. 8. Last year, Fairfield’s Sally Fulcher ran the Fairfield Half Marathon to raise awareness and funds for the PH Foundation. She netted nearly $17,000.

    The Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by raising the level of awareness about hydrocephalus and provides support to families, friends, and children affected by this brain condition.

    Additionally, the PHF advocates on behalf of the members of the hydrocephalus community and works with policy makers at the state and federal levels to raise awareness and push for more research and support in the fight against hydrocephalus. All donations are tax-deductible.

    September is National Hydrocephalus Awareness Month and it is estimated that one in 500 babies in the United States are born with Hydrocephalus each year.

    The event costs $40 to reserve a bike. Click here to register online and click here to donate.

    Source:

    PHF in The News: Fairfield Woman Inspired To Run Half-Marathon By Friend’s Daughter

    June 22, 2014 by  
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    FAIRFIELD, Conn. – For the past four months, Sally Fulcher of Fairfield has been training to run her first half-marathon this Sunday. But her goal goes beyond tackling the 13.1-mile course: She is seeking to raise awareness for an incurable disease affecting her friend’s young daughter.

    For Cindy Shanley, the past year has been filled with doctor’s visits, hospital stays and a constant awareness of the brain disorder hydrocephalus, which afflicts her 20-month-old daughter, Reagan.

    The painful condition causes an abnormal amount of spinal fluid to build, widening spaces in the brain. It can cause increased pressure inside the skull and progressive enlargement of the head as well as other problems. It can be fatal.

    “There is no cure for this,” Shanley said. The only treatment is surgical, to release the fluid built up in the brain. Even at her young age, Reagan, she said, has already had two surgeries to reduce the amount of fluid in her brain.

    Some children are born with hydrocephalus and others develop it. The condition is most common in infants and affects nearly one in every 500 births. Reagan seems to have developed the problem.

    “What Sally is doing is to raise awareness.” Shanley said. She and her family are grateful for the time and effort that Fulcher is putting in to help their cause.

    Always a runner, Fulcher said she has not done any long-distance runs since having children and has never run far as a half-marathon.

    But having the motivation to raise money for awareness and research for her friend’s second child pushed her into running the Stratton Faxon Fairfield Half, which benefits the Pediatric Hydrocephalus Foundation.

    “I knew this was a great cause,” Fulcher said. Before Reagan was diagnosed, she said she had no idea that the condition even existed.

    “This is the longest I’ve ever run,” Fulcher said. “And it’s a pretty hilly course.”

    But she’s hoping the weather will be on her side Sunday and won’t be too hot as she hits the course.

    So far, Fulcher’s donation page has raised over $4,800, nearly double her initial goal. Donations can still be made online.

    Source:

    PHF In The News: Southport runner running for friend’s child

    June 11, 2014 by  
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    More than 4,000 runners are expected to participate in the 34th Stratton Faxon Fairfield half marathon on June 22 and there are probably that many reasons why they do it.

    Some of the top runners, like the Kenyans, run for the prize money while others do it for more personal aspirations.

    Southport resident Sally Fulcher, who will be taking part in her first half marathon in two weeks, falls into the latter category.

    She is running the Fairfield race in honor of her friend Cindy Shanley’s 20-month-old daughter Reagan, who has an incurable brain condition known as Hydrocephalus.

    “I decided to run the Stratton Faxon Fairfield half to raise some money for a wonderful cause very close to my heart,” Fulcher said. “When Reagan was first diagnosed with this disease, I remember thinking I’d never even heard of it, which is part of the problem, and I hope to change that.”

    Fulcher has set up a website for friends and family to help support her mission at www.active.com/donate/runsallyrun and already has raised more than $2,000.

    Occurring in approximately one of every 500 births, Hydrocephalus is a condition in which excessive cerebral spinal fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues.

    Since there hasn’t been a lot of advancements in treatment, many affected with the disease are unable to lead productive lives.

    Hydrocephalus is the leading cause for pediatric brain surgery in the United States and can be fatal if left untreated.

    Fulcher has done short races for years and ran some 5K and 10K events when she lived in England.

    However, her last official race was the JP Morgan Chase Challenge four years ago before she had kids.

    Including the 5K race (June 21 at 8:15 a.m.) , which generally attracts in excess of 1,000 runners, more than 5,000 people will hit Jennings Beach for one of the top half marathons in New England.

    The half marathon will begin 15 minutes earlier this year with an 8:15 a.m. start.

    Kenyans took the top-three spots last year led by Eric Chirchir, who finished with a winning time of 1:05.58, a pace of just over five minutes per mile.

    Source:

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