Research UPDATE: Investigating Alternative Treatment Options for Hydrocephalus

March 14, 2013

The Hydrocephalus Association (HA) Research Department update focuses on the research of Dr. Sonia Podvin who aims to develop safe, specific drugs to treat hydrocephalus. She is the recipient of a Mentored Young Investigator (MYI) award from HA.

Looking Back…Moving Forward: Growing Up with HA

March 13, 2013

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.

Research UPDATE: Genetic Mutation Found as a Cause of Neonatal Hydrocephalus

March 7, 2013

A recent study has shown that a specific type of neonatal hydrocephalus can be caused by defects in cellular signaling pathways. The study, out of the University of Iowa, is being led by Val C. Sheffield, MD, Ph.D, and his research team using a mouse model of Bardet-Biedl syndrome (BBS). BBS is a rare disorder that can cause hydrocephalus, among other conditions.

Looking Back…Moving Forward: Prescribing Success

March 6, 2013

The Hydrocephalus Association’s Medical Advisory Board is comprised of nineteen esteemed medical professionals that work closely with our staff to support the educational needs of our members as well as help guide our research vision. As part of our interview series in commemoration of our 30th anniversary, Ashly Westrick, Research Manager, sits down with Dr. Michael Williams, Medical Advisory Board member and co-chair of our recent national conference, “Getting to the Heart of Hydrocephalus”.

SAT and ACT Survival Tips

March 6, 2013

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.

Teen Voices: Hydrocephalus has Changed My Life

February 28, 2013
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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

Hydrocephalus Association at 30

January 30, 2013

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?

Teen Voices: Taking on High School with No Regrets

January 22, 2013

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.

Is There a Cure for My Dementia?

November 11, 2012

Today’s article in Parade Magazine, What If Grandpa Doesn’t Really Have Alzheimer’s?, plays an important role in our quest to educate the public about the form of hydrocephalus called Normal Pressure Hydrocephalus or NPH. While the condition was identified over 50 years ago, there is little research into the condition, which so far is the only known reversible form of dementia but it is often mistaken for Alzheimer’s or Parkinson’s Disease.

scholarship, hydrocephalus

Announcing our Hydrocephalus Association TTC Scholarship Recipients!

November 2, 2012

The Hydrocephalus Association Teens Take Charge program trains teenagers and young adults (and their siblings), who are affected by hydrocephalus, to take charge of the condition and become self-advocates with both health professionals and with their legislators. Through a generous grant from the Medtronic Foundation, the Hydrocephalus Association is able to award five scholarships, in the amount of $1,000, to teens and young adults (ages 17 to 25) who are affected by hydrocephalus.

Making Life Happen: Living Life with Spina Bifida and Hydrocephalus

October 25, 2012
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October is Spina Bifida Awareness Month and October 25th is the first World Spina Bifida and Hydrocephalus Day sponsored by the International Federation for Spina Bifida and Hydrocephalus (IF) and supported by the European Parliament. In the Hydrocephalus Association’s efforts to raise awareness about spina bifida and hydrocephalus, we would like to highlight an inspiring young adult from our community. Meet Luke Russell, a freshman at the University of Wisconsin-Whitewater who plans to major in marine biology with either a second major or a minor in psychology. He has spina bifida and hydrocephalus.

Voices from Our Community: David Walters Shares his Hydrocephalus Story

September 24, 2012

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.