Help us determine the direction of hydrocephalus research!

ResearchTOGETHER.
SHAPING THE FUTURE OF HYDROCEPHALUS RESEARCH.

We are excited to announce our collaboration with the Hydrocephalus Clinical Research Network (HCRN) on research projects important to the hydrocephalus community. We would like your input on which areas of hydrocephalus interest you most, and what you would like to be researched.

Click here to complete our research survey!

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One Person CAN Change the World

Megan Redfearn, hydrocephalus momBy Megan Redfearn
Reposted with permission from Megan’s personal blog

A friend tagged me in a post on Facebook of a picture that said something very simple, yet very profound. It was a perfect way of saying something that I’ve always felt and believed, even though I’ve heard the words that were crossed out many times. But, it made me start to think… Read more

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AARP Bulletin Features Normal Pressure Hydrocephalus

Normal Pressure Hydrocephalus mimics dementia, AARP article

“8 Treatable Conditions That Mimic Dementia,” AARP Bulletin April 2014

By Marvin Sussman, Ph.D.

The April 2014 issue of the AARP Bulletin featured an article entitled “Am I Losing My Mind? – Conditions That Mimic Dementia” by Margery D. Rosen. The article presents eight forms of dementia which mimic Alzheimer’s Disease (AD) but may be treatable. Dementia is a chronic or persistent disorder of the mental processes caused by a variety of brain diseases or injuries marked by memory disorders, personality changes, and impaired reasoning. The first cause discussed in the article is Normal Pressure Hydrocephalus or NPH. NPH is an accumulation of cerebrospinal fluid that causes the ventricles in the brain to gradually enlarge, sometimes with little or no increase in intracranial pressure. A distinct medical syndrome most commonly seen in older adults, it is accompanied by some or all of a triad (3) of symptoms that include gait disturbances, dementia, and impaired bladder control.

The article recounts the experience of Read more

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Conference is only 3 short months away!

Conference is only 3 short months away! You don’t want to miss this wonderful opportunity to connect with others and hear from experts in the field.

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HCRN PI’s offer point and counterpoint of shunting and ETV/CPC

HCRN Logo

By Paul Gross, Past Chair of the Board of Directors, Co-Chair of the Research Committee
Reposted with permission from the HCRN Blog

HCRN Chairman John Kestle and HCRN investigator Jay Riva-Cambrin were published in AANS Neurosurgeon this month in counterbalancing articles about changes in treatment of hydrocephalus and the impact of new procedures going forward. Dr. Riva-Cambrin discusses his observations in nuances of the treatment of hydrocephalus since he was trained as a neurosurgeon in the late 1990s. He highlights the re-emergence of the endoscopic third ventriculostomy with the addition of choroid plexus coagulation and the potential for changing the default treatment of hydrocephalus with a shunt. Dr. Kestle’s article provides the counterpoint that despite these innovations, shunts are the “workhorse” of hydrocephalus treatment and we must continue to improve the outcomes for patients treated with a shunt. Both of these articles make for interesting reading about the evolution of hydrocephalus treatment.

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Bringing Normal Pressure Hydrocephalus Out of Obscurity

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Dr. Salomon Hakim, NPHIn the 1960s, a treatable form of neurodegeneration or dementia, was a controversial claim. Most clinicians did not believe that such conditions could be reversed surgically by diverting excess of cerebrospinal fluid (CSF) in the brains of affected patients using a shunt. Dr. Salomon Hakim’s background in neurology, neurosurgery, and neuropathology along with his mechanical expertise and intrinsic curiosity enabled him to formulate and present his hypothesis on Normal Pressure Hydrocephalus (NPH) 50 years ago, this year. He questioned things that others were simply content to accept, to take the NPH puzzle out of autopsy labs and relative obscurity and to bring it into the real world as a clinically diagnosable and, more importantly a treatable syndrome.  Even after many decades of clinical and scientific study on this subject, Dr. Hakim’s story remains largely untold and, unfortunately, many people suffering from this condition remain misdiagnosed or undiagnosed by the general medical community. We invite you to learn more about Dr. Salomon Hakim and the medical syndrome and patients he dedicated his life to, namely, those living with Normal Pressure Hydrocephalus. Read more

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Countdown to Conference: Conference’s Biggest Take-Aways

Hylea BlankOur 13th National Conference on Hydrocephalus will be held in Portland, Oregon, from July 9-11, 2014. Leading up to the event, parents, teenagers, medical professionals and other individuals in our community are taking a moment to reflect on what it means to attend a conference. This week, Haylea Blank, from North Carolina, shares her favorite conference memory from our 2010 conference, “It’s About Life,” which took place in Cleveland, Ohio, as well as her most meaningful take-aways.

By Haylea Blank

I was diagnosed with hydrocephalus when I was one month old, and have undergone a total of 21 hydrocephalus-related surgeries and procedures. I am now 24. On December 27, 2002, I had an endoscopic third ventriculostomy (ETV) and the ventricular-peritoneal (VP) shunt  Read more

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Hydro Queen

Hydro Queen

A poem by Karly Rodriguez

I have a secret to tell you
I have found the Eighth Sea
It’s within me
Yes, I am the Hydro Queen. Read more

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Countdown to Conference: Tips on making it affordable!

2014 Conference LogoThe National Conference on Hydrocephalus is our biennial gathering which provides people living with hydrocephalus and their loved ones, an opportunity to learn from experts in the field, hear about the latest research, and make or renew connections with others who share a similar experience. Join medical professionals, representatives of health industry corporations, parents, children, people living with hydrocephalus and people affected by it, as we celebrate our community.

While we strive to keep costs down for attendees and provide some financial aid for registration, there are other costs to consider, such as airfare and accommodations. Because of the chronic nature of hydrocephalus, many of us struggle to make ends meet. So we have put together a tip sheet to give you ideas on identifying sources that might provide financial assistance. Read more

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Dr. John Kestle to Return to Primary Children’s Hospital in June 2014

Dr. John Kestle, NeurosurgeonBy Paul Gross, Past Chair of the Board of Directors, Co-Chair of the Research Committee
Reposted with permission from the HCRN Blog

Dr. John Kestle is returning to Primary Children’s Hospital as a pediatric neurosurgeon and Vice Chair of Clinical Research, for the University of Utah Department of Neurosurgery. After an evaluation of the role of Chief of Surgery at University of British Columbia, Dr. Kestle decided to return to his core passions of pediatric neurosurgery, conducting clinical research into hydrocephalus and other neurosurgical conditions, and mentoring others in these areas. Dr. Kestle will also continue his work with the adult study group for hydrocephalus initiated by the Hydrocephalus Association.

BC Children’s Hospital’s Dr. Doug Cochrane will continue in his role as the PI in HCRN for that institution maintaining Hydrocephalus Clinical Research Network’s nine center presence across North America.

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