HA Blog
Mary Smellie-Decker Award Recipient Announced
The Hydrocephalus Association (HA) with the American Association of Neuroscience Nurses (AANN) are pleased to announce this year’s Mary Smellie-Decker award recipient.
Looking Back…Moving Forward: Diagnosed with Hydrocephalus at 44
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).
What is SPML Anyway (and try saying it 3X quickly)?
Lori Poliski shares her family’s experience with SPML, a surgical treatment for children and adults primarily with Spastic Diplegia Cerebral Palsy (SDCP).
Looking Back…Moving Forward: Fresno Says YES to Our Hydrocephalus WALK
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.
Research UPDATE: Investigating Alternative Treatment Options for Hydrocephalus
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
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
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
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
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
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
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.
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?
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.
A Mother’s Love
A Mother’s Love, Andrea By Alexandrea, diagnosed at 6 weeks (who is non-verbal) written by…
Is There a Cure for My Dementia?
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.
Announcing our Hydrocephalus Association TTC Scholarship Recipients!
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.
Making Life Happen: Living Life with Spina Bifida and Hydrocephalus
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
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.
Voices from Our Community: Joyce Schwartz Spreads Her Message about Normal Pressure Hydrocephalus
Joyce Schwartz shares her 23 year journey of searching for a diagnosis and then treatment for Normal Pressure Hydrocephalus (HA).