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
Increased Awareness Helps Grand Prairie Man Get Correct NPH Diagnosis
Emma Lee and Charlie Trump thought Charlie had the incurable and devastating condition Alzheimer’s, after all that’s what their doctor said. That is until a local news channel did a story on Normal Pressure Hydrocephalus. They recognized the symptoms, got a correct diagnosis and the right treatment. This proves that a little awareness can go a long way.
See the video and read the text of their story.
Go here to see the news story that made all the difference.
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
Arizona Man’s NPH Treatment Featured in Local Paper
Ed and Betty Stall
Edwin “Ed” Stall had been diagnosed as having Parkinson’s in 2007. His recent correct diagnosis and treatment for Normal Pressure Hydrocephalus (NPH) has put him back in the driver seat. His story is featured in EastValleyTribune.com.
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.
Teens Take Charge Speaks Up About Bullying
Introduction by Jennifer Bechard, Support Group Liaison
Bullying is a serious problem children and teenagers face every day in schools and communities across the country. Whether it is physical, verbal, or cyber, it leaves permanent emotional marks on one’s life. After the launch of 30 Seconds: AAPD’s Campaign to Stop Bullying, we asked members of our Teens Take Charge Advisory Council to discuss their thoughts on the subject. Wyatt Barris shares a personal experience with bullying, while Nicole Padron offers her personal advice. Read more
Tributes to a Passionate NPH Physician Advocate — The Passing of Harold O. Conn, MD
Harold O. Conn, MD was a world-famous doctor specializing in diseases of the liver. After his retirement he developed Normal Pressure Hydrocephalus (NPH) and thus embarked on his second career which was to study and spread awareness of this condition. His perspective was unique and informed, and his work was generous and insightful. In this article HA board member Marvin Sussman, PhD and Carlos Hakim, PhD pay tribute to Dr. Conn and his work. Read more
2012 Hydrocephalus Research Conference Agenda
Opportunities for Hydrocephalus Research: Pathways to Better Outcomes
Westin Hotel, Seattle, WA
Monday, July 9, 2012
Causes of Hydrocephalus – directors introduced by Pat McAllister, PhD, Monday AM
- Genetics – directed by Esteban M. Rodgriguez, MD, PhD, Instituto de Histologia y Patologia, Facultad de Medicina, Universidad Austral de Chile Valdivia, Chile
- Neuromodulation – directed by Marc Del Bigio, MD, PhD, Department of Pathology, University of Manitoba, Winnipeg, Manitoba, Canada
Diagnosis of Hydrocephalus – directors introduced by Sam Browd, MD, PhD; Monday PM
- Biomarkers – directed by David D. Limbrick, MD, PhD, Department of Neurosurgery, Washington University, St. Louis, MO
- Neuroimaging – directed by Mark Wagshul, PhD, Department of Radiology and Gruss Magnetic Resonance Research Center, Albert Einstein College of Medicine, Bronx, NY
Tuesday, July 10, 2012
Treatment of Hydrocephalus – directors introduced by Jill Morris, NIH; Tuesday AM
- Bioengineering – directed by Sam Browd, MD, PhD and Barry Lutz, PhD, Departments of Neurosurgery and Bioengineering, Seattle Children’s Research Center and the University of Washington, Seattle, WA
- Surgical – directed by Jay Riva-Cambrin, MD, Primary Children’s Medical Center and the University of Utah, Salt Lake City, UT
Outcome in Hydrocephalus – directors introduced by Paul Gross, Chairman, Hydrocephalus Association;
Tuesday PM
- Neuropsychology – directed by Jack M. Fletcher, PhD, Department of Psychology, University of Houston, Houston, TX
- Neurological and Quality of Life – directed by Abhaya Kulkarni, MD, PhD, Department of Neurosurgery, Toronto Hospital for Sick Children, Toronto, Canada
Wednesday, July 11, 2012
These 1 ½ hour sessions are intended to provide a consensus on each of the 4 main focus areas, with group discussions led by an expert in the field and plenty of audience interaction.
- Causes of Hydrocephalus – moderated by Pat McAllister, PhD
- Diagnosis of Hydrocephalus – moderated by Norman Relkin, MD, PhD, Department of Neurology, Weill Cornell Medical College, New York, NY
- Treatment of Hydrocephalus – moderated by Marion (Jack) Walker, MD, Primary Children’s Medical Center and the University of Utah, Salt Lake City, UT
- Outcome in Hydrocephalus – moderated by Michael A. Williams, MD, Adult Hydrocephalus Center, Sinai Hospital, Baltimore, MD
Join the 2012 Virtual WALK Community Today
By Jordan Faigen, National Campaigns Manager
While our HA WALK events are reaching new cities year after year, many times families and individuals still cannot attend even the closest event. We started our Virtual WALK program last year and we are pleased to announce that we are launching our 2012 Virtual WALK website! By registering on this website people can create teams or sign up as individuals and fundraise for HA by holding their own small WALK or other event. Read more
Rhode Island Teen with Hydrocephalus not Allowed to Attend School Dance
Danielle Bacon, a high school senior from Coventry, RI is being prohibited from attending her school’s Winter Ball. Still recovering from recent surgery to treat her hydrocephalus she has been given permission to attend the dance by her doctor. However, school policy says she can only attend the dance if she goes to school on the day of the dance.
Click here, to read the text of the article, or watch the embedded video below.
