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
07:00 Continental Breakfast and Registration
08:00 Introduction-Sponsor Acknowledgements
Dawn Mancuso, FASAE, CAE, Chief Executive Officer, Hydrocephalus Association
08:10 CAUSES OF HYDROCEPHALUS
Directors introduced by Pat McAllister, PhD; Department of Neurosurgery, Division of Pediatric Neurosurgery, University of Utah, Salt Lake City, UT
Plenary Session 1: GENETICS – Directed by Esteban Rodriguez, MD, PhD
08:10 Speaker: William B. Dobyns, MD; Seattle Children’s Research Institute & University of Washington, Seattle, WA
Title: The genetic basis of human hydrocephalus: hindbrain development, growth regulation and more
08:40 Director: Esteban Rodriguez, MD, PhD; Instituto de Histologia y Patología, Universidad Austral de Chile Valdivia, Chile
Title: Abnormal neurogenesis in foetal onset hydrocephalus in humans and animal models: opening the avenue for stem cell therapy
09:10 Speaker: Antonio J. Jimenez, PhD; Departamento de Biología Celular Genética y Fisiología, University of Malaga, Spain
Title: Repair mechanism of the disrupted ventricular zone in hydrocephalic animal models and humans
09:40 Discussion
10:00 Break
Plenary Session 2: PATHOPHYSIOLOGICAL MODIFICATIONS – Directed by Marc R. Del Bigio, MD, PhD
10:15 Director: Marc R. Del Bigio, MD, PhD; Department of Pathology & Canada Research Chair in Developmental Neuropathology, University of Manitoba, Winnipeg, Manitoba
Title: Mechanisms of cellular and axonal injury in hydrocephalus: hypoxia-ischemia in slow motion
10:45 Speaker: Stephen A. Back, MD, PhD; Departments of Pediatrics and Neurology, Oregon Health & Science University, Portland, OR
Title: Mechanisms and potential therapies for white matter injury: unexpected mechanisms of regeneration and repair
11:15 Speaker: Jerold Chun, MD, PhD; Department of Molecular Biology, Dorris Neuroscience Center, The Scripps Research Institute (TSRI), La Jolla, CA
Title: Lysophosphatidic acid (LPA) signaling in post-hemorrhagic hydrocephalus
11:45 Discussion
12:05 Lunch
Speaker: J. Gordon McComb, MD; Children’s Hospital of Los Angeles, University Children’s Medical Group, Los Angeles, CA
Title: Funding for promising aspects of hydrocephalus research by the Rudi Schulte Research Institute, Santa Barbara, CA
13:00 KEYNOTE ADDRESS
Speaker: Marc Randolph; founder & first CEO of Netflix, Santa Cruz, CA
Title: “That will never work”: the role of failure in success – the founding of Netflix
13:45 DIAGNOSIS OF HYDROCEPHALUS
Directors introduced by Samuel R. Browd, MD, PhD; Department of Neurological Surgery Seattle Children’s Hospital and the University of Washington, Seattle, WA
Plenary Session 3: BIOMARKERS– Directed by David D. Limbrick, MD, PhD
13:45 Director: David D. Limbrick, MD, PhD; St. Louis Children’s Hospital & Washington University School of Medicine, St. Louis, MO
Title: Introduction to biomarkers and brief review of post-hemorrhagic hydrocephalus
14:15 Speaker: Laurence Watkins, MD; Victor Horsley Department of Neurosurgery, National Hospital for Neurology and Neurosurgery, Queen Square, London
Title: Biomarkers of NPH – molecules and other predictors of outcome
14:45 Speaker: Richard S. Morrison, PhD; Department of Neurological Surgery, Centers on Human Development and Disability & Proteomics, Intellectual and Developmental Disabilities Research Center, University of Washington School of Medicine, Seattle, WA
Title: Proteomic characterization of human ventricular cerebrospinal fluid from patients with hydrocephalus
15:15 Discussion
15:35 Break
Plenary Session 4: NEUROIMAGING- Directed by Mark Wagshul, PhD
15:50 Speaker: William G. Bradley, MD, PhD; Department of Radiology, University of California, San Diego, CA
Title: MRI of hydrocephalus with thoughts on the etiology of Idiopathic NPH
16:20 Speaker: Norman Relkin, MD, PhD; Cornell Memory Disorders Program & Departments of Clinical Neurology and Neuroscience, New York Presbyterian Hospital/Weill Cornell Medical College, New York, NY
Title: Quantitative MRI techniques for improved differential diagnosis and treatment of NPH
16:50 Director: Mark Wagshul, PhD; Department of Radiology and Gruss Magnetic Resonance Research Center, Albert Einstein College of Medicine, Bronx, NY
Title: Mechanisms in hydrocephalus revealed by neuroimaging
17:20 Discussion
17:40 Adjourn
Tuesday, July 10, 2012
07:00 Continental Breakfast and Registration
08:00 TREATMENT OF HYDROCEPHALUS – Directors introduced by Jill A. Morris, PhD; Program Director in Neurogenetics, NIH/NINDS, Bethesda, MD
Plenary Session 5: BIOENGINEERING ADVANCES- Directed by Samuel R. Browd, MD, PhD and Barry Lutz, PhD
08:00 Director: Samuel R. Browd, MD, PhD and Barry Lutz, PhD; Departments of Neurological Surgery and Bioengineering, Seattle Children’s Hospital and the University of Washington, Seattle, WA
Title: Overview of bioengineering and hydrocephalus: 50 years in 30 minutes
08:30 Speaker: Thomas J. Clement, MS; Cardiac Insight, Inc./Aqueduct Neurosciences, Inc., Seattle, Washington
Title: Roadmap for commercialization: from idea to product
09:00 Speaker: David A. Watson; Dave Watson Engineering, San Jose, California
Title: Risks and misdirection: critical areas to focus shunt technology development
09:30 Discussion
09:50 Break
Plenary Session 6: SURGICAL TREATMENTS – Directed by Jay Riva-Cambrin, MD
10:10 Director: Jay Riva-Cambrin, MD; Primary Children’s Medical Center and the University of Utah, Salt Lake City, UT
Title: Methodology for critical assessment of new techniques, the impact of surgical adjuncts in shunt placement and revisions, and novel advances in infection prevention
10:40 Speaker: Benjamin Warf, MD; Children’s Hospital Boston, Boston, MA
Title: The expanding role of combined endoscopic third ventriculostomy and choroid plexus cauterization (ETV/CPC) as the primary treatment for infant hydrocephalus
11:10 Speaker: Richard J. Edwards, MD; Department of Neurosurgery, Frenchay Hospital, Bristol, UK
Title: Strategies to reduce proximal catheter revision rates
11:40 Discussion
12:00 Lunch
13:00 OUTCOME IN HYDROCEPHALUS – directors introduced by Paul Gross; Chairman, Hydrocephalus Association
Plenary Session 7: NEUROPSYCHOLOGICAL OUTCOMES – Directed by Jack M. Fletcher, PhD
13:00 Director: Jack M. Fletcher, PhD; Department of Psychology, University of Houston, Houston, TX
Title: Hydrocephalus: Why is there variability in neuropsychological outcomes?
13:20 Speaker: Andrew Zabel, PhD; Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD
Title: Spina bifida and hydrocephalus across the lifespan: Part I – Children
13:45 Speaker: Maureen Dennis, PhD; Program in Neurosciences and Mental Health and Department of Surgery, The Hospital for Sick Children and the University of Toronto, Toronto, Ontario
Title: Spina bifida and hydrocephalus across the lifespan: Part 2 – Adults
14:10 Speaker: Michael A. Williams, MD; The Sandra and Malcolm Berman Brain & Spine Institute, Sinai Hospital, Baltimore, MD
Title: Redeeming Salomon’s Prophesy – Reversible neuropsychological deficits of INPH
14:35 Discussion
14:50 Break
Plenary Session 8: NEUROLOGICAL OUTCOMES AND QUALITY OF LIFE – Directed by Abhaya V. Kulkarni, MD, PhD
15:10 Director: Abhaya V. Kulkarni, MD, PhD; Departments of Neurosurgery and Neurology, Toronto Hospital for Sick Children, Toronto, Ontario,
Title: Quality of life in children with hydrocephalus
15:40 Speaker: Paige T. Church; MD, Sunnybrook Health Sciences Centre and University of Toronto, Toronto, Ontario,
Title: Troubled waters: hydrocephalus and the preterm infant
16:10 Speaker: Mohit Bhandari, MD; Canada Research Chair, Department of Surgery and Clinical Epidemiology, McMaster University, Hamilton, Ontario
Title: Advantages of evidence-based treatments: changing the philosophy of a field and identifying good research
16:40 Discussion
17:00 Adjourn
18:00 – 19:00 Reception in the Pine Room, Westin Seattle
Wednesday, July 11, 2012
07:00 Continental Breakfast
08:00 Closing Day Welcome
Dr. Richard G. Ellenbogen M.D, Professor and Chair of Neurological Surgery, Theodore S. Roberts Endowed Chair of Pediatric Neurological Surgery, University of Washington
08:05 HYDROCEPHALUS ASSOCIATION LECTURE
Speaker: Paul Gross; Chair, Board of Directors, Hydrocephalus Association
Title: Insights into NIH funding
Discussion
GROUP DISCUSSIONS
These sessions are intended to provide a consensus on each of the main focus areas with substantial audience interaction. Initial emphasis will be on the critical issues facing future research as identified in the plenary sessions.
08:45 CAUSES OF HYDROCEPHALUS
Moderator: Pat McAllister, PhD; Primary Children’s Medical Center and the University of Utah, Salt Lake City, UT
Panelists: Esteban Rodriguez, MD, PhD; William Dobyns, MD; Antonio Jimenez, PhD; Marc Del Bigio, MD, PhD; Stephen Back, MD, PhD; Jerold Chun, PhD
09:45 Break
10:00 DIAGNOSIS OF HYDROCEPHALUS
Moderator: Norman Relkin, MD, PhD; Department of Neurology, Weill Cornell Medical College, New York, NY
Panelists: David Limbrick, MD, PhD; Laurence Watkins, MD; Richard Morrison, PhD; Mark Wagshul, PhD; William Bradley, MD, PhD
11:00 TREATMENT OF HYDROCEPHALUS
Moderator: Marion (Jack) Walker, MD; Department of Neurosurgery, Division of Pediatric Neurosurgery, University of Utah, Salt Lake City, UT
Panelists: Sam Browd, MD, PhD; Tom Clement; David Watson; Jay Riva-Cambrin, MD; Benjamin Warf, MD; Richard Edwards, MD; Richard G. Ellenbogen, M.D.
12:00 Lunch
13:00 OUTCOME IN HYDROCEPHALUS
Moderator: Michael A. Williams, MD; The Sandra and Malcolm Berman Brain & Spine Institute, Sinai Hospital, Baltimore, MD
Panelists: Jack Fletcher, PhD; Andrew Zabel, PhD; Maureen Dennis, PhD; Abhaya Kulkarni, MD, PhD; Paige Church, MD
14:00 CRITICAL SUMMARY OF THE SYMPOSIUM and WHERE WE SHOULD BE IN 3 YEARS
Basic Science
Pat McAllister, PhD; Department of Neurosurgery, Division of Pediatric Neurosurgery, University of Utah, Salt Lake City, UT
Bioengineering
Samuel R. Browd, MD, PhD; Department of Neurological Surgery, Seattle Children’s Hospital and the University of Washington, Seattle, WA
Clinical
John R.W. Kestle, MD, MSc; Department of Neurosurgery, Division of Pediatric Neurosurgery, University of Utah, Salt Lake City, UT
14:45 Closing Remarks – Paul Gross
15:00 Adjourn
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.
2012 Hydrocephalus Scholarships Now Available
The Hydrocephalus Association is pleased to offer nine scholarships to young adults with hydrocephalus. The scholarships are $1,000 each and will be awarded in June. To read more about the instructions, criteria and how to apply please click here. We are accepting applications now through April 1, 2012!
NPH Featured in CBS’s ‘A Gifted Man’
Last week, Normal Pressure Hydrocephalus (NPH) was featured on the CBS show, ‘A Gifted Man‘.
The episode aired 1/6/12. Click here to see the clip from the episode.
2012 Neuro Film Festival
There is an opportunity to submit a short video to The American Academy of Neurology Foundation telling your story about why more research is needed to find a cure to hydrocephalus. Please read the following on the guidelines and deadline for submission.
