NINDS Director Dr. Landis to Headline HA’s Conference in June
We are honored and thrilled to report that Dr. Story C. Landis, the distinguished Director of the National Institute for Neurological Disorders and Stroke (NINDS), will be a keynote speaker at the Hydrocephalus Association’s 12th National Conference on Hydrocephalus: Getting to The Heart of Hydrocephalus. Dr. Landis will address the importance of hydrocephalus research and how this research fits into NINDS’ mission.
Story Landis, Ph.D. has been Director of the National Institute for Neurological Disorders and Stroke (NINDS) – one of the institutes that comprises the National Institutes of Health (NIH) and the largest funder of brain research – since 2003. A native of New England, Dr. Landis received her undergraduate degree from Wellesley College (1967) and her Ph.D. from Harvard University (1973). After postdoctoral work at Harvard University, she served on the faculty of the Department of Neurobiology there. In 1985, she joined the faculty of Case Western Reserve University School of Medicine, where she created the Department of Neurosciences which, under her leadership, achieved an international reputation for excellence. Throughout her research career, Dr. Landis has made fundamental contributions to the understanding of nervous system development. She has garnered many honors, is an elected fellow of the Institute of Medicine, the Academy of Arts and Sciences, the American Association for the Advancement of Science, and the American Neurological Association, and in 2002 was elected President of the Society for Neuroscience. Read more
A Season of Change
By Dawn Mancuso, HA CEO
I do not know what this winter has been like where you live, but here in the D.C. area, the winter has been much more like a lamb than a lion. Not that I am complaining, mind you, but it does mean that the trees and plants in the area are a bit confused. Crocuses blooming and trees budding in February? What will that do to our spring blooms, especially the Cherry Blossoms, which are usually so beautiful? As much as I dislike the cold of winter, I would hate to see the wonder of spring dulled by a change in weather that arrives too soon. Read more
Advocacy Day in Washington, DC: Climbing Capitol Hill for a Cure!
“On Hydrocephalus Advocacy Day, May 30, 2006, 120 hearty souls braved the heat in Washington, D.C. on a mission to ask our elected representatives to devote more federal support to hydrocephalus research and treatment. I was moved by everyone’s vibrant courage. Though most of you had never pursued legislative advocacy before, we did amazing work together, meeting with the staff of 48 senators and 51 congressional representatives. We reached almost half of the Senate members and over 11% of the House representatives. Fantastic!” Hydrocephalus Association Newsletter, Summer 2006.
Advocacy Day 2006
Our first Advocacy Day event was held in 2006 during our 9th National Conference on Hydrocephalus in Baltimore MD. As part of this year’s 12th National Conference on Hydrocephalus, all attendees will participate in another Advocacy Day in Washington, DC.
Experts will provide workshops and training at the conference on how to talk to our representatives, how to make them aware of hydrocephalus, and how to encourage them to support hydrocephalus research. Read more
Hydrocephalus Association’s Resident’s Prize: Dr. Ashley G. Tian
Ashley G. Tian, MD
One way the Hydrocephalus Association promotes research and leadership in hydrocephalus is through our annual Resident’s Prize. This prize is awarded each year to the most promising hydrocephalus-related research paper presented by a neurosurgical resident at the Pediatric Section meeting of the American Association of Neurological Surgeons/Congress of Neurological Surgeons (AANS/CNS). The prize is designed to encourage young doctors to focus their research efforts on advancing treatment and care of individuals with hydrocephalus. Read more
Happy Valentine’s Day! Let’s Show we Care!
Happy Valentine's Day
The Hydrocephalus Association is dedicated to helping families and individuals whose lives have been touched by hydrocephalus and the professionals who work diligently to create a brighter future through medical excellence and research.
There are many ways to show your love and care to the community. We invite you to:
Register Today for the 12th National Conference on Hydrocephalus!
June 27-July 1, 2012
Bethesda North Marriott Hotel & Conference Center, Bethesda, MD
The goal of the conference is to provide tools and connections to address the medical, educational and social challenges of living with hydrocephalus and to provide the opportunity for an enjoyable get together! Hydrocephalus is a chronic condition for which there is no cure. Our patient-centered conferences empower all of us to understand, seek out and put into place, care programs and services that will meet our needs now and well into the future. Read more
Thinking About Starting a Hydrocephalus Association (HA) WALK? My Experience Chairing a New HA WALK!
By Rachel Inskeep, Chair – 2011 Inaugural Wichita WALK for HA
Hello prospective WALK chairs! My name is Rachel Inskeep from Wichita, KS. I am 35 and I work full time as a registered respiratory therapist at a local hospital. My husband and I have been married for 8 years; we have a 15-year old son from his prior marriage (living with us full time), a 6 year old daughter and a 4 year old son – who has hydrocephalus. We found out about his hydrocephalus at my 18 week sonogram. Needless to say, as I am sure some of you experienced, the rest of my pregnancy was full of worry, wondering and prayer that our sweet baby boy would be okay. This led to my first introduction to HA – I called the HA office and spoke with a very kind lady who talked to me and sent me information. Fortunately, due to a small change in his CT scan, my son didn’t require a shunt until he was 7 months old. He is now doing well and we are so proud of him!
From the CEO: Another way to say “I Care”
As I sit and write this blog to you, I am thinking about what the month of February means to the hydrocephalus community. Now, for many people, it is the month when the Super Bowl takes place – the culmination of the season-long competition to find out which team goes home with the coveted prize – a Super Bowl ring. To others, especially many here in DC, it’s all about the ongoing political primaries which will ultimately determine who is running for the most coveted office in the country – that of the President of the United States. For those more romantic at heart, February hosts Valentine’s Day, when we are reminded to say “I love you” to all those special people in our lives. Read more
Normal Pressure Hydrocephalus Guidelines
By Tom Smith and Michael Williams, MD
In 2000, the late Anthony Marmarou, PhD convened an independent study group to begin the process of addressing one of the major issues surrounding Normal Pressure Hydrocephalus (NPH). After convening, these experts published five guidelines concerning NPH. Read more
Hydrocephalus Awareness Hits the Ice
By Jordan Faigen, National Campaigns Manager
Are you looking for great ways to raise money as a WALK participant? Eileen Rodger, the HA South Florida WALK Chair, spent an evening on the ice and raised over $1,000 in a matter of hours. Read her inspiring story and explore your community for creative fundraising opportunities, then share your success with us, email jordan@hydroassoc.org.
