Hydrocephalus Association

College grad with hydrocephalus

2018 Scholarship Cycle OPEN!

We are now accepting applications for our 2018 Hydrocephalus Association Scholarship Program.

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Get to Know Our Conference Host City

For those that are traveling we hope you will take a couple days to explore this wonderful host city for our conference and enjoy the world-famous theme parks and, stunning beaches, designer shopping, delightful fairs and so much more.

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Meet our Conference Team!

HA is pleased to announce some of the brightest minds in the field who are generously offering their time, expertise and talent in planning the 15th National Conference on Hydrocephalus

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Book Your Hotel for Conference!

Housing is open for the National Conference on Hydrocephalus which will take place on June 28-30, 2018 at the Irvine Marriott in Orange County, California. Book your hotel!

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The Challenges of Transitioning to Adult Care

HA has long been aware of inequality in care for children and adults with hydrocephalus, and we are taking steps to bridge the gap.

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Whole Foods Features Cider With A Purpose

Jason Spears and his brother Patrick founded Locus Cider in March of 2015 inspired by real, tough people, a.k.a children with hydrocephalus.

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What Can’t You Live Without?

Read Genesis Espaillat first-person account of life with hydrocephalus, which she wrote in honor of September being Hydrocephalus Awareness month.

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Hydrocephalus Association Education Days

Hydrocephalus Education Days Provide Connections

Complementing our National Conference on Hydrocephalus, we are proud to host Hydrocephalus Education Days in select cities across the USA.

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Hydrocephalus Association Scholarships

Announcing Our 2016 Hydrocephalus Association Scholarship Recipients!

The Hydrocephalus Association (HA) is pleased and honored to announce our 2016 Hydrocephalus Association Scholarship Recipients.

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HA-Nominated Advocate Joins Department of Defense Medical Research Peer Review Board

Barrett O’Connor, a Hydrocephalus Association-nominated patient advocate, is serving on the latest panel reviewing applications for medical research at the DoD.

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New Research Initiative to be Launched at HA’s Vision Dinner

The annual Vision Dinner held in New York City will unveil the new Hydrocephalus Association Network for Discovery Science (HANDS).

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Concussions: A Serious Problem for Students

Kathryn Theisen explains the importance of teachers, counselors, medical professionals and students working to support students suffering from concussions.

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

The First Year of College: An Honest Look at My Experience

Teens Take Charge Mentor Task Force Member, Madeleine Darowiche, shares the highlights and challenges of her first year away from home at college.

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Teen with money

Money, Money, Money – Helping Out Without Emptying Wallets

TTC Member Megan Rivkin challenges young people to get involved in advocating and fundraising to increase research efforts and public awareness of hydrocephalus.

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Neuroscience Nurse

Mary Decker Mentorship Award: Call for Nominations

Nominate a dedicated Neuroscience Nurse with demonstrated excellence in neurosurgery, specifically with hydrocephalus, for the Mary Decker Mentorship Award!

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Couple Builds Longstanding Home for Handicapped Sons

The Cibulas spent a decade building a house that their sons could grow up in and live in after their parents were gone. It features cutting-edge technology and does not aesthetically announce that anyone disabled lives there.

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The “Tone at the Top”

Hydrocephalus Association CEO Dawn Mancuso discusses the recent meeting of the board of directors and the tone set for the association.

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2012 WALKs and Special Events – The Year in Review

The Hydrocephalus Association had a successful year of WALKS and Special Events, thanks to the dedication of our WALK and Special Event Chairs. A look back at our 2012 events…

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Parade Magazine Features Story on NPH

Parade Magazine features a story on normal pressure hydrocephalus (NPH) and the journey of Jimmy Nowell of Clifton, Texas to find a diagnosis and treatment. Dr’s Mark Luciano and Michael Williams of the HA Medical Advisory Board are interviewed for the article.

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Birmingham Reporter Finds a New Hero

James Phillips of the Daily Mountain Eagle shares a moving story of support for 5-year-old Addox Morrow as Addox’s team prepares to walk on November 11th in the 5th Annual Alabama Hydrocephalus Association WALK.

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Delivering on a Promise

Update on the current research initiatives of the Hydrocephalus Association, focusing on a presentation by Paul Gross, Board Chairman, at the Trans-NIH Hydrocephalus Meeting in October. The meeting included representatives from four different Institutes within the NIH – the NINDS, the National Institute of Child Health and Human Development (NICHD), the National Heart, Lung & Blood Institute, and the National Institute of Biomedical Imaging and Bioengineering (NIBIB).

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Country Music Concert Raising Funds for the Hydrocephalus Association

Performing artist Angie Raulerson and her band, Jaguar Country, will perform Friday, October 26 at 7:00 pm at Central Michigan University’s Plachta Auditorium. The concert is a tribute to the country legends of yesterday. Joining Angie will be Michael Twitty son of country legend Conway Twitty. He will perform some of his father’s great songs in his memory. The concert will benefit the Hydrocephalus Association.

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“Fall back” isn’t the way to start off this season!

The Hydrocephalus Association CEO, Dawn Mancuso, reflects back on September and Hydrocephalus Awareness Month.

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What Do We Want? A CURE! When Do We Want It? NOW!

September is not the only month to raise awareness about hydrocephalus. Join us in celebrating the launch of our Advocacy Toolkit, a resource to communicate with elected officials and the media.

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Tennessee Mom Calls for Research Funding of Hydrocephalus

Chara McLaughen raises awareness and calls for increased funding for research into hydrocephalus.

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Hydrocephalus Association Launches Spanish-language Pages on Hydrocephalus

Hydrocephalus Association launches Spanish-language pages on hydrocephalus The Hydrocephalus Association proudly announces the launch of our Spanish-language information pages on hydrocephalus. Our launch falls at the midpoint of Hispanic Heritage month (mid-September through mid-October) as well as serves as a celebratory ending to September’s Hydrocephalus Awareness month. The Spanish-language pages provide critical information to Spanish-speaking […]

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Voices from Our Community: Joyce Schwartz Spreads Her Message about Normal Pressure Hydrocephalus

Four years ago, Mia Padron of Long Island, New York, was on a mission to make a difference for the life of her son and all other individuals living with hydrocephalus. Her son, Tyler, who is now 10, was born with hydrocephalus but not diagnosed until he was 23 months old. Those 23 months were […]

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Voices from Our Community: David Walters Shares his Hydrocephalus Story

David Walters was diagnosed with hydrocephalus at 2 weeks old and has had one shunt revision. He is an active teenager and member of the Hydrocephalus Association Teens Take Charge program. Read his story.

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NY State Senator John Flanagan Proclaims September Hydrocephalus Awareness Month

NY State Senator John Flanagan proclaims September Hydrocephalus Awareness Month. Joined by Mia Padron, Senator Flanagan presented the Hydrocephalus Association with a resolution he sponsored to help raise awareness of the hydrocephalus.

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Voices from Our Community: Joyce Schwartz Spreads Her Message about Normal Pressure Hydrocephalus

Joyce Schwartz shares her 23 year journey of searching for a diagnosis and then treatment for Normal Pressure Hydrocephalus (HA).

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9/15 – Richmond, Virginia Hydrocephalus Support Group Meeting

~Partners Network ~ Hydrocephalus Support Group Meeting  Virginia TOPIC: Overview of 12th HA Conference When: Saturday, September 15, 2012  2:30pm to 4:00pm Where: Rappahannock Regional Library England Run branch 806 Lyons Blvd Fredericksburg, VA 22406 Please R.S.V.P. to Annie Mason by Wednesday March 21, 2012 (540) 898-4568 or Richmondsupport@hydroassoc.biz Find our group on Facebook under […]

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Raising Awareness…From Coast to Coast!

Strength. Perseverance. Endurance. Spirit. Do these traits sound familiar? Of course, these are all words that describe individuals touched by hydrocephalus. These words also describe Mark Paulissen and Mary Sodano. Their spirit of adventure and love for bicycling has spurred them onto a journey of a lifetime. Sponsored by Celsius drink company, Mark and Mary have challenged […]

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Voices from our Community: Madeleine Speaks Up About Hydrocephalus

By: Madeleine Daraowiche Hi, my name is Madeleine. I am 17 years old and will be a junior in high school. I have had hydrocephalus since before I was born. I was diagnosed in utero, and had my first shunt placed when I was 15 days old. Since then, I have had six shunt revisions. […]

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Tracy Taback has Article about Hydrocephalus Published in The Hartford Courant

Tracy Taback raises awareness about hydrocephalus, shares her personal journey, and announces the upcoming Middlebury, Connecticut WALK scheduled for October 6th. To read the full article, click here.

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Fiona Wilcox Makes it Back to School for the First Day of the Year

The Brink/The Oregonian reports on the heartwarming story of Fiona Wilcox who returns from a surgery in time for the first day as a freshman at Jefferson High School. To read the full article, click here.

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2500 Mile Bike Ride will Benefit the Hydrocephalus Association

Mark Paulissen and Mary Sodano  are preparing to embark on a 2500 mile bike ride journey ride for a cause near to their hearts, hydrocephalus. To read the full article, click here.

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Duke University Study on Stem Blood Cell Infusions to Benefit Infants with Congenital Hydrocphalus

Baby Tyler, born in Pittsburgh, PA, receives infusions comprised of stem cell blood from her umbilical cord and placenta as part of a study by Duke University blood and marrow transplant program. To read the full article, click here.

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Voices from Our Community: Milton Newman Shares His Story of Normal Pressure Hydrocephalus

Fog is Lifted After 15 Years of Confusion and Misdiagnosis Milt Newman’s retirement was not living up to expectations due to a slow progression of seemingly inexplicable mental and physical decline. What no one knew was that Milt, then 73, was suffering from Normal Pressure Hydrocephalus (NPH), a treatable neurological disorder in which excess fluid […]

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Back To School Time!

It’s that time of the year – back to school time! Most kids around the country will have returned to school this past Tuesday, September 4th, if they have not already. This can be an exciting yet stressful time for parents and kids alike. While kids may be worried about facing the academic rigors of […]

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Voices from Our Community: Abby Shares Her Life Experiences With Hydrocephalus!

By: Abby Wood Hi!  My name is Abby.  I turned 12 years old at the end of August and this is a snapshot of my life.  I was born in Albuquerque, New Mexico. When I was born, I was very sluggish and tired. My parents found out that I had hydrocephalus a few weeks later […]

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