TTC Blog

Looking Back…Moving Forward: Telling Her Own Story

The Hydrocephalus Association continues its 30th anniversary interview series with Olivia Maccoux, a high school senior, who feels she has been given the opportunity to grow and help others struggling with the challenges of hydrocephalus.

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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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Back to School Time!

In our monthly Hydrocephalus Association Teens Take Charge blog, Madeleine shares her advice for starting the year off on the right foot. Have you lined up your support system for the new school year yet?

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One Teen, One French Bulldog, and One Common Journey with Hydrocephalus

Nina is a dog lover. She brings one special French Bulldog into her life as they share a common journey with hydrocephalus. She shares her story with the Hydrocephalus Association.

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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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You, the Healthcare Wizard and Finding the Perfect Plan

If you’re new to buying healthcare, finding the perfect plan can be like trying to find the Wizard without having a yellow brick road to guide you to the Emerald City, especially when you’re living with a pre-existing condition like hydrocephalus.

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Have You Recently Been Diagnosed with Hydrocephalus?

Madeleine Darowiche offers words of advice to teens newly diagnosed with hydrocephalus in the monthly Hydrocephalus Association Teens Take Charge blog.

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The Intrepid Traveler: My Trip to Machu Pichu, Peru

In the second entry of her travel journal, Gina Barbaro shares her journey to Machu Pichu and tips on travelling to high altitudes with hydrocephalus.

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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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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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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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What are the Cranial Nerves?

An educational blog on the cranial nerves serving as a supplement to the Thrasher Research Fund’s study blog evaluating eye movement tracking for the detection of hydrocephalus posted by the Hydrocephalus Association.

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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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Looking Back…Moving Forward: Dedicated to Human and Community Service

“Be yourself, and do not let hydrocephalus define who you are.” A quote from a graduating college senior as she reflects on the 30th anniversary of the Hydrocephalus Association in our interview series.

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Normal on the Outside: A Teen’s Journey with Hydrocephalus

Elizabeth Holthouse, a high school senior, shares her video documentary about her journey with hydrocephalus, called “Normal on the Outside.” The Hydrocephalus Association talks with Liz about her experience making the video and the message she wants to send to the world.

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Water on the Brain?

TTC Advisory Council Member Madeleine Darowiche shares her recent experience with her mom and a man with Normal Pressure Hydrocephalus.

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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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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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Olivia Maccoux Dubbed ‘Iron Athlete’ By High School Teammates

The Minneapolis Star Tribune reports on our very own Olivia Maccoux who has shone as a star athlete. Park Center high school classmates have dubbed her the ‘Iron Athlete’ for her incredible athletic performances and perseverance.

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The Intrepid Traveler: Machu Pichu, Here I Come!

Travel Journal Entry #1: Planning my trip to Machu Pichu, Peru. Avid walker, intrepid traveler, and currently treated for Normal Pressure Hydrocephalus, Gina shares her plans for visiting Machu Pichu. Travel suggestions and tips for individuals with hydrocephalus are also provided.

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Looking Back…Moving Forward: The Heart of a Pediatric Neurosurgeon

As the Hydrocephalus Association continues its interview series in commemoration of their 30th anniversary, Dr. Harold L. Rekate, Director of the Chiari Institute in New York, sits down and shares a personal account of what inspired him to become a neurosurgeon, a career shaped by hydrocephalus and its patients, and his relationship with the Hydrocephalus Association.

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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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Have You Encountered Any Challenges in School Due to Hydrocephalus?

We asked on our Teens Take Charge Facebook Page: “Have you encountered any challenges in school due to hydrocephalus? What have you done to overcome them?” Many young adults and parents shared personal experiences with us.

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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: It’s About Relationships

HA Board Member and former VP of Sales for Medtronic, Ralph Kistler, reflects back on his 20+ year relationship with the Hydrocephalus Association.

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Brain 101: The Ventricles and CSF Flow

As a follow up to the previous article on the anatomy and physiology of the brain, the Hydrocephalus Association would like to continue our learning and explore the terms we so often hear when dealing with hydrocephalus.

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Looking Back…Moving Forward: Growing Up with HA

Our Teens Take Charge (TTC) program provides support, training, awareness and fundraising opportunities so that teens can be an effective force in making their stories heard. As part of our interview series in commemoration of our 30th anniversary, our intern, Jessica Ford, sits down with Haylea Lynn Blank, to talk about growing up with hydrocephalus and her thoughts on the Hydrocephalus Association.

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SAT and ACT Survival Tips

As many young adults in our Teens Take Charge (TTC) program prepare to take their ACTs and SATs, we wanted to take a moment to put your minds at ease with some helpful suggestions, tips and insight from one of your fellow peers, Madeleine Darowiche.

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Are You An Assertive Member of Your Health Care Team?

We asked on our Hydrocephalus Association Facebook Page: “Many of us work with a team of health care providers. What are your top three tips on how you communicate with them to be an assertive and effective member of the team? ” We had received some really valuable input and feedback. Here is what some of you shared with us:

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Teen Voices: Hydrocephalus has Changed My Life

I am amazed at how hydrocephalus has changed my life…but I would not change it. Here is my story. Within weeks of my birth the doctor expressed concerns about the amount of growth of my head. My parents were referred to a neurologist who diagnosed me with communicating hydrocephalus

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Looking Back…Moving Forward: One Vision Built on Determination

Hydrocephalus Association commemorates our 30th anniversary with a series of interviews with members of our community. These intimate and conversational pieces provide both educational content as well as a historical perspective on the heart behind the work of our association. This week we sit down with two of our founding members, Emily Fudge and Cynthia Solomon, to discuss the early days of forming the association, including their vision and their challenges.

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Teen Voices: Thankful I Found Teens Take Charge

From fundraisers, awareness and advocacy events to sharing personal stories and experiences on our website and social media networks, teens and young adults across the country are banning together to create a network of support for each other. Madeleine Darowiche shares how Teens Take Charge has benefited her life.

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Preparing Yourself for College

Heading off to college is a very exciting time in one’s life, but for individuals living with a complex medical condition like hydrocephalus it can also be a scary and intimidating step to take. The Hydrocephalus Association wants you to know that you are not alone and that there a programs and resources available to support and guide you through the transition process.

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Looking Back…Moving Forward: Commemorating 30 Years

Over the last 30 years, the Hydrocephalus Association has significantly impacted the health care and scientific communities as well as the lives of individuals affected by hydrocephalus. We look back on the last 30 years presented in a timeline of our significant milestones.

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Now Accepting Applications for Hydrocephalus Scholarships!

The Hydrocephalus Association is now receiving applications for its 2013 Scholarship Program.

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Hydrocephalus Association at 30

In 1983, a small group of parents of children with hydrocephalus living in the San Francisco Bay area came together seeking community and support. Thirty years ago could this group of determined and committed individuals have imagined that the Hydrocephalus Association would become the nation’s largest and most widely respected advocacy group dedicated to hydrocephalus?

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Teen Voices: Taking on High School with No Regrets

Starting high school can be tough, especially when you are dealing with a medical condition such as hydrocephalus. Madeleine shares her advice for taking on high school.

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