Study on CTE and Athletes Focuses on Early Symptoms

A new study of former athletes with chronic traumatic encephalopathy (CTE) hopes to find ways to detect early stages of the condition and, thereby, early diagnosis for treatment interventions prior to significant symptom onset. The study is being conducted by Robert Stern of Boston University’s Center for the Study of Traumatic Encephalopathy and will partner with researchers at Brigham and Women’s Hospital to interview former football players and non-contact athletes.

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A 12 Year-Old WALKS for a Cure

Matthew Schwerha, reporting for The Norridge-Harwood Heights News, interviews Vanessa Valentin, who’s 12 year-old son Enrique has hydrocephalus, at the Chicago WALK, which took place on August 18, 2013 at Soldier’s Field. The Norridge-Harwood Heights News is part of the Chicago Sun-Times.com network.

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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 Zane has hydrocephalus, at the Chicago WALK, which took place on August 18, 2013 at Soldier’s Field. The Doings Weekly is part of the Chicago Sun-Times.com network.

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Teen-led WALK Brings Together 100 People

Dylan Johnson organized and led the ANOKA River WALK, making him the first teen WALK chair for the Hydrocephalus Association. 100 local residents came together to raise awareness of hydrocephalus.

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Announcing Our 2013 Research Grant Recipient

Vogel The Hydrocephalus Association (HA) is pleased to announce that the association is offering funding for an additional research grant in its 2013 grant cycle.  This grant will  help advance the priorities established in HA’s 2012 research conference,  Opportunities in Hydrocephalus Research: Pathways to Better Outcomes.  After an extensive review process by our distinguished Scientific and Medical Review  Committee, HA has selected Timothy Vogel, M.D., from Cincinnati Children’s Hospital  Medical Center, for his proposal, “Role of neural progenitor cells in the development of neonatal hydrocephalus.” Read more

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NEW Hydrocephalus Educational Webinar Launch

Hydrocephalus Association Webinar SeriesBy: Karima Roumila and Jennifer Bechard, Support and Education Staff

The Hydrocephalus Association is pleased to announce our 2013 Education and Support webinar series! This series will consist of four interactive, free webinars that are designed to educate our community on a variety of topics which include, but are not limited to, Normal Pressure Hydrocephalus (NPH), research and shunt technology. We will be featuring presentations from medical professionals, researchers and many different individuals with a direct connection to hydrocephalus. Read more

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

Ann Marie Flannery, MD, neurosurgeonAs we continue our interview series in commemoration of our 30th anniversary, we sit down with Ann Marie Flannery, M.D., a Pediatric Neurosurgeon who works at the Cardinal Glennon Children’s Medical Center of Saint Louis University in Missouri. Dr. Flannery is board certified in both adult and pediatric neurosurgery and a member of our Medical Advisory Board (MAB). She looks back on her involvement with the Hydrocephalus Association (HA) and its contribution to the medical community as well as speaks openly about the concerns young adults express about transitioning to adult neurological and neurosurgical care. Read more

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Back to School Time!

Madeleine DarowicheBy: Madeleine Darowiche, Teens Take Charge Advisory Council Member

It’s that time of year – back to school time! Whether you are in middle school, high school, or college, starting a new school year can be stressful and even nerve-wracking. That is why I feel that it is so important to have a strong support system in your corner.

For me, my greatest support system has been my family. Even though I was too young to remember, I know that my hospitalizations were a difficult and trying time for my parents and my twin brother. No matter what, my family has been there for me every step of the way, and for that I am so thankful. From the time I was about four years old to the age of ten, I was fortunate enough to have encountered no complications with my shunt. It was not until the age of eleven that my shunt needed to be replaced. It was a tough time for my family, as we had already been dealing with a few other misfortunes, but they remained by my side through it all. It is great to know that my family will always be there to encourage me in everything that I do. Without their constant support, I never would have been able to accomplish all that I have and it has enabled me to succeed academically and personally.

The second form of support that I feel is very important, but is sometimes difficult to obtain, is the support from teachers, professors and school faculty. Having the proper support from your teachers can be a crucial factor in reaching your full potential. I am not an expert myself, but from personal experiences I do understand that some people refuse to listen. Many people have never heard of hydrocephalus because it is not as well-known as other conditions. Oftentimes teachers can be reluctant to learn. It is important to educate these people on your condition, especially if you require certain accommodations as a result of hydrocephalus and its effects.

The Hydrocephalus Association (HA) offers valuable resources to help you achieve this goal. Talking about hydrocephalus with your school faculty can be a daunting task, but once you do, you will be relieved that you did, because you tried to better your academic future. If your school faculty is not as accommodating to your condition and needs, it cannot hurt to try again. Even though the experience can be quite frustrating, never be afraid to be your own advocate. It is an important step into adulthood, no matter what age you stand up for your specific needs.

If nothing works, please know that despite this setback, you can and will find a way to succeed in your academic endeavors! Remember, family will almost always be there to support you, as will the Hydrocephalus Association and the Teens Take Charge (TTC) community!

Today, I challenge you to download the Hydrocephalus Association’s Guide for Teacher’s and Healthcare Transition Guide. Take the first step in becoming your own advocate and educating your school on hydrocephalus. It will all be worth it, and you can do it!

Good luck to everyone and have a great year!

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Gala Dinner Early Fundraiser for New Mexico WALK

The Rio Rancho Observer interviews our New Mexico WALK Chair, Kathy Carillo, about the upcoming WALK and a smaller fundraising dinner she is organizing to galvanize her team. The Black and White Gala Dinner, to be held on August 24th, will have Sonja McCully, a librarian at Rio Rancho Public Schools, as the keynote speaker. McCully was misdiagnosed with Alzheimer’s, then eventually correctly diagnosed with normal pressure hydrocephalus.

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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.

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