shunt

Digital Journal Features Lexi Rocciola’s Trip to Meet Taylor Swift

Digital Journal features Alexis “Lexi” Rocciola, who recently attended a meet and greet with Taylor Swift before her August 27, 2013, concert in Sacramento. Alexis shared her journey of living with hydrocephalus with the famous singer.

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HA WALK Chair Featured in The Charlotte Observer

Summer Minchew, Hydrocephalus Association Charlotte, NC WALK Chair and support group leader, shares her moving personal experience of her son’s diagnosis and treatment for hydrocephalus, and proudly announces the inaugural WALK for Charlotte in The Charlotte Observer’s MomsCharlotte.com.

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Celebrities Take Notice of Hydrocephalus

Justin Timberlake, Taylor Swift, Alison Sweeney, Dr. Lauren Streicher, Kasey Kahne, and Dick Wagner are all helping raise the profile of hydrocephalus, a little known brain condition that affects 1 million Americans, from infants to seniors. The Hydrocephalus Association thinks this is a great way to kick off Hydrocephalus Awareness Month, September 2013.

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Current Chicago WALK Chair Featured in Local News

Matthew Schwerha, reporting for the Barrington Courier-Review, interviews one of our current Chicago WALK Chairs, Katie Cook, who’s son Conor has hydrocephalus. The Chicago WALK took place on August 18, 2013 at Soldier’s Field.

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Inaugural Charlotte WALK Featured in The Charlotte Observer

MomsCharlotte.com features our Charlotte WALK Chair, Summer Minchew, and the upcoming inaugural Charlotte WALK. The WALK takes place on September 28, 2013.

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Local Chicago Family WALKS for Young Zane

Matthew Schwerha, reporting for The Doings Weekly, interviews Susan Yousif, who’s 2 year-old son has hydrocephalus, at the Chicago WALK, which took place on August 18, 2013 at Soldier’s Field.

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NEW Hydrocephalus Educational Webinar Launch

The Hydrocephalus Association is pleased to announce our 2013 Education and Support webinar series! In this first webinar, Dr. Michael Williams, Medical Director of the Sandra and Malcolm Berman Brain and Spine Institute at Sinai Hospital of Baltimore, will discuss how the diagnosis of normal pressure hydrocephalus can be missed, and how it can be made. Register today!

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Looking Back…Moving Forward: The Need to Value Shunt Management

As the Hydrocephalus Association continues our 30th anniversary interview series, Ann Marie Flannery, M.D., shares her thoughts on young adults transitioning to adult neurological care and issues a call to action for society to value the management of shunts and the individuals living with them.

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Houston WALK Raises Awareness for Hydrocephalus in Local Media

Woodlands Online features the upcoming Hydrocephalus Association Houston WALK. This in-depth piece highlights two personal stories and raises awareness to the need to raise funds for research into better treatment options and, ultimately, a cure for hydrocephalus. Join the Houston WALK on September 21, 2013.

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Boston Globe Shares Local Man’s Journey with NPH

Boston Globe health reporter, Kay Lazar, shares the story of Jim Lambert’s journey of misdiagnosed Normal Pressure Hydrocephalus, after an initial diagnosis of Alzheimer’s.

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Hundreds of DC-Area Residents will Run for Hydrocephalus

PRWeb highlights the upcoming National Capital 5K Run/WALK for Hydrocephalus to benefit the Hydrocephalus Association. More than 600 local runners and walkers are anticipated to participate in the 3rd annual event.

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Looking Back…Moving Forward: A Sister’s Love

Roxana Ramos became a Hydrocephalus Association Support Group leader to connect her brother to others that have hydrocephalus, only to realize family members benefit, as well. As we continue our interview series commemorating our 30th anniversary, we sit down with Roxana to talk about her motivation behind her volunteer position and the value her service brings to the hydrocephalus community.

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Medical Device Development and Evolution: A Comparative Study

In this educational blog, Marvin Sussman, PhD, compares the evolution of the cardiac pacemaker and radiation oncology with that of the shunt to treat hydrocephalus over a 60 year period.

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Raising Awareness about Hydrocephalus, One Stroke at a Time

Thomas, who was diagnosed with hydrocephalus as an infant, has become a successful competitive swimmer, finding balance and freedom in the pool.

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Good Housekeeping Magazine Raises Awareness of Hydrocephalus

Cortney Pellettieri of Los Angeles, CA, is selected as one of 5 women committed to a cause and making a difference. She is the co-chair for the Los Angeles Hydrocephalus WALK, which will raise funds and awareness for a condition that affects 1 million Americans and is the leading cause for brain surgery in children.

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Looking Back…Moving Forward: With A Little Help From My Friends

In commemoration of the Hydrocephalus Association 30th anniversary, David Walters, Teens Take Charge member, shares his thoughts on the importance of our biannual conference and the impact of the Hydrocephalus Association (HA).

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Dr. Adam Mednick Interviewed About NPH on Connecticut Morning News Program

Dr. Adam Mednick is interviewed by WTIC Fox Connecticut about the diagnosis and treatment of Normal Pressure Hydrocephalus.

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Looking Back…Moving Forward: Celebrating 10 Years as a WALK Chair

As we continue our interview series in commemoration of the Hydrocephalus Association’s 30th anniversary, we sit down with Phyllis Rogers, who is in her 10th year chairing the Denver WALK, as she reflects on her drive to continue to chair the WALK and her hopes for the future of the Hydrocephalus Association.

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A Community Unites Around a Local Teen

CBS-affiliate WCIA News Channel 3 reporter Jeff Wagner reports on Morgan Miller, 14 years old living with hydrocephalus, who has been hospitalized since Friday after acute shunt failure and cardiac arrest. The Hydrocephalus Association sends our thoughts and support to Morgan and her family.

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HCRN Update: First Report from HCRN’s Large Registry

Dr. Jay Riva-Cambrin, Hydrocephalus Clinical Research Network (HCRN) lead investigator, presented the first analysis of the data collected on children with hydrocephalus in the HCRN registry. Findings will help advise families and guide HCRN’s future research.

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Looking Back…Moving Forward: Creating a Sense of Community

The Hydrocephalus Association continues our 30th anniversary interview series with Summer Minchew, our Charlotte, NC Support Group leader. She reflects on her role as a support group leader and moving the vision beyond the traditional support group framework and into creating a hydrocephalus community.

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Congratulations to Our 2013 Scholarship Recipients!

The Hydrocephalus Association is proud to announce our 2013 scholarship recipients.

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Wyatt Takes TTC to the Streets of Willow, CA

Wyatt Barris, Hydrocephalus Association Teens Take Charge Advisory Council member, spreads awareness of hydrocephalus in his annual hometown parade, the Willows Lamb Derby, in Willows, CA.

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HCRN Update: Biomarkers in Post Hemorrhagic Hydrocephalus

Dr. David Limbrick discuss his current research study which aims to develop a complimentary tool to supplement the information from imaging in order to determine the best time to treat infants with post hemorrhagic hydrocephalus.

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Stand and Deliver

Afraid or embarrassed to let others know you have hydrocephalus? Madeleine Darowiche shares her experience of telling her high school classmates about living with hydrocephalus.

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Medical Alert IDs and Hydrocephalus

The Hydrocephalus Association discusses Medical Alert IDs and their importance for hydrocephalus patients in an emergency situation – without proper identification, common symptoms, such as headaches, dizziness, sleepiness and vomiting can be misdiagnosed and appropriate care could be jeopardized or delayed.

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Normal Pressure Hydrocephalus Featured in The Saturday Evening Post

An article in The Saturday Evening Post plays an important role in educating the public and raising awareness about the form of hydrocephalus called Normal Pressure Hydrocephalus or NPH, often referred to as the reversible form of dementia.

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Behind the Recall: Codman Provides Details

The Hydrocephalus Association sits down with a vice president from Codman Neuro and two members of our Medical Advisory Board (MAB) to discuss the recent recall of CODMAN® CERTAS™ Programmable Valves, also known as shunts, and how it relates to patients. Please read and share the latest information on the recall.

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Looking Back…Moving Forward: Adding a Touch of Pixie Dust

Tina Daniels, Hydrocephalus Association Support Group leader in Owasso, OK, shares her experiences living with hydrocephalus and her decision to lead a support group.

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Brushes with Mortality: 5 Lessons On Dealing with Hard Times

Rachel Katz, diagnosed with hydrocephalus at the age of 12, shares the transformational gift she received after her last shunt revision. Read her blog, “Brushes with Mortality: 5 Lessons On Dealing with Hard Times.” Be inspired.

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New Hydrocephalus Shunt Systems Page Launched!

The Hydrocephalus Association is pleased to announce the launch of our Shunt System page on our website. Learn more about shunt system components, valve mechanisms, most common shunt systems, overdrainage control devices, Siphon-resistive devices (SRD) and the different symptoms of malfunction and/or infection.

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Looking Back…Moving Forward: Six Years After My Shunt Was Installed

In this two part blog, Gilda Katz opens by sharing her journey of being diagnosed with Normal Pressure Hydrocephalus and the importance of her interactions with the Hydrocephalus Association. A must read for individuals living with NPH, recently diagnosed with NPH, or concerned about symptoms of memory loss, confusion, incontinence, and a troubling gait.

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Nicole Wiegers: A Crusader, In Every Sense of the Word

The Whitinsville Christian girls basketball team in Whitinsville, Massachusetts, decided to use their school’s “Senior Night” to share the story of their teammate, to raise awareness to some of the challenges of living with hydrocephalus, and to raise money to fund hydrocephalus research.

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HA Mom Raises Awareness in the Missourian

Robin Friedrich shares her son Clayton’s story of being born with hydrocephalus in the Missourian From Our Readers series. She has made it her life mission to raise awareness for hydrocephalus. She will participate in the St. Louis WALK this September.

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Establishment of a Hydrocephalus Registry Currently Under Consideration in Australia

The Australian Government Department of Health and Aging has submitted a report currently under review to establish a registry of individuals with hydrocephalus. The registry is part of a larger initiative by the Australian government to improve surveillance of certain high risk implantable medical devices as well as track patient outcomes.

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HCRN Update: Shunt Outcomes in Post Hemorrhagic Hydrocephalus

In a new Research Department blog series, HCRN Update, Ashly Westrick interviews Dr. Jay Wellons, principal HCRN investigator for the Shunt Outcomes in Post Hemorrhagic Hydrocephalus study.

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Looking Back…Moving Forward: It Doesn’t Make Us Different…It Makes Us Stronger

Teens Take Charge Advisory Council member, Wyatt Barris, speaks out about living with hydrocephalus and being an advocate for the condition.

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I Smile Because You Are My Sibling…

The relationship between siblings is complex and sometimes even…shall we say… strained, but there is a powerful, unbreakable bond that endures through the best and hardest of times. Teens Take Charge (TTC) Advisory Council Members, Harrison Silver and Alexis Rocciola, share a special message to their siblings in our National Siblings Day blog honoring a special group of loved ones in our lives – brothers and sisters.

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Looking Back…Moving Forward: From the NICU to Medical School

Jennifer Bechard sits down with Jamie Wright, our Support Group Leader in Houston, TX, as we continue our history series commemorating our 30th anniversary. Jamie was born six weeks prematurely, diagnosed with post-hemorrhagic hydrocephalus, and was shunted at 20 months old. She is now in her second year of medical school at the University of Texas Medical School at Houston, where she is in a combined MD/PhD program.

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Looking Back…Moving Forward: Fresno Says YES to Our Hydrocephalus WALK

As part of our interview series commemorating our 30th anniversary, this week Randi Corey, our National Director of Special Events and Volunteer Support, sits down with Cheryl Merrell, our Hydrocephalus Association WALK Chair in Fresno, California, to talk about volunteering for HA, starting and chairing a HA WALK, and other thoughts about the organization.

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