HA Blog

HCRN Update: Shunt Outcomes in Post Hemorrhagic Hydrocephalus

April 18, 2013

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

April 17, 2013

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

April 10, 2013

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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I Smile Because You Are My Sibling…

April 10, 2013

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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Update on Health Care Research Funding: Hydrocephalus Association in Action

April 9, 2013

In the monthly CEO Blog, Dawn Mancuso discusses the many ways HA advocates for members of our community.

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Looking Back…Moving Forward: It’s About Relationships

April 3, 2013

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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President Announces Funding for BRAIN Initiative

April 3, 2013

President Obama announced that he is proposing $100 million in federal research dollars toward a brain mapping initiative that will ultimately open the door to better treatment options for many brain conditions, including traumatic brain injuries, Alzheimer’s disease, and stroke.

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Mary Smellie-Decker Award Recipient Announced

March 30, 2013

The Hydrocephalus Association (HA) with the American Association of Neuroscience Nurses (AANN) are pleased to announce this year’s Mary Smellie-Decker award recipient.

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Looking Back…Moving Forward: Diagnosed with Hydrocephalus at 44

March 27, 2013

Our history as an association is a reflection of the richness and diversity of the engaged and committed members of our community. As we continue our interview series commemorating our 30th anniversary, we take a moment to hear reflections from individuals around the country who have interacted with the Hydrocephalus Association (HA) and supported HA throughout the years. This week we chat with Angela Lacey. who was 44 years old when she was diagnosed with normal pressure hydrocephalus (NPH).

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What is SPML Anyway (and try saying it 3X quickly)?

March 25, 2013

Lori Poliski shares her family’s experience with SPML, a surgical treatment for children and adults primarily with Spastic Diplegia Cerebral Palsy (SDCP).

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

March 20, 2013

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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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.

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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.

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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.

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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”.

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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.

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Teen Voices: Hydrocephalus has Changed My Life

February 28, 2013

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

February 21, 2013

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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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?

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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.

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