Here at the Hydrocephalus Association, we are focused on different, but similar, things this month. We too are involved in a competition, but ours takes place on multiple playing fields with what I believe to be more important consequences (apologies to all the Giants & Patriots fans out there).  If you have been reading the newspaper or watching the news, you know that our country has many challenges before it.  That means there is much competition for time, money and other resources – resources needed to help those dealing with hydrocephalus today and to help us find a prevention or cure, hopefully in the not-too-distant future.

HA has committed precious resources of its own to participate in that competition, both on Capitol Hill and in the halls of various government agencies (such as the National Institutes of Health, or NIH; the Department of Defense, or DOD; and the Department of Health and Human Services, or DHHS).  Our goals are to raise awareness, raise research dollars, and employ government resources that already exist to overcome obstacles we have been facing for far too long.

To that end, we have developed close working relationships with key Congressional representatives who are working on our behalf to encourage NIH to dedicate more resources to the study of hydrocephalus and to our educational efforts. (Click here to see a copy of a letter Rep. DeLauro recently sent to the NIH on our behalf.)  We are watching for the appropriate legislative vehicle for a bill that might reinforce this message. We are following leads that may help us to tie into the research being done by the military on traumatic brain injury. We are building our Teens Take Charge program to foster a cadre of young adults willing to speak out about the challenges they face on a daily basis. We are finalizing plans for our day on Capitol Hill, being held here in DC on Thursday, June 28^th, in conjunction with the HA Conference.  We will be training conference participants about how Hill visits work and about the key talking points. We will also be holding a special Congressional reception that evening, where we will present our first-ever public service award to one of our friends in government.  In addition, we are looking at opportunities to work collaboratively with like-minded organizations as a way to leverage our influence. And, we are always looking for new volunteers to assist us in getting all this work done!

As you can see, HA is involved in the competition for resources in the political arena, among others. Back to my original discussion about what the month of February means to us, you might ask, “What about Valentine’s Day?”  Well, this might be a little bit of a stretch, but I believe there are multiple ways to say we care. Sometimes it is as simple as sending a note of appreciation. Sometimes it means breaking out of your comfort zone and doing something new that will have a positive impact on another person’s life. Or, it could mean reaching out and committing time and energy to an effort that will make a difference.  So, what are you doing for Valentine’s Day? Are you registering for our conference so you can be a part of our day on Capitol Hill (click here for conference information)? Are you visiting your Congressional representatives in your local community? If you are, please let us know. Are you a teen that hasn’t signed up for the Teens Take Charge program yet? If you are, please visit our web page.

We hope you will consider this Valentine’s Day challenge as one way to say “I care,” because that’s what we are all here for.

Happy Valentine’s Day to you all! And, just for the record…Go Giants!

Dawn

See the video and read the text of their story.

Go here to see the news story that made all the difference.

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.

The guidelines, for the first time, rigorously reviewed the existing evidence regarding the diagnosis, treatment and outcomes in NPH, and as a result provided a structured framework that significantly influenced the treatment of NPH as well as research on the disorder. The guidelines also identified significant gaps in our knowledge that has led to new clinical and basic research.

These guidelines consist of five independent papers: Development of Guidelines, Diagnosis, Prognostic Tests, Surgical Management, and Outcomes.

The following are links to the guidelines:

1. Development of INPH Guidelines Intro
2. Diagnosing INPH
3. Value of Prognostic Tests for INPH
4. Surgical Management of INPH
5. Outcome of Shunting in INPH

For more NPH resources please go to the NPH Page on our website.

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.

Click here to read his story.

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.

Making a difference

It was a hockey night in South Florida!  On Friday, January 13, 2012, Team Alex, from the South Florida Hydrocephalus WALK, joined forces with the Florida Panthers Foundation with a 50/50 raffle during their game against the Pittsburgh Penguins. The Panthers may have lost but the Hydrocephalus Association sure won as Alex and 30 of his closest friends bombarded hockey fans as they sold tickets for the raffle at the beginning of the game and during both intermissions.  Not only did team Alex have fun raising awareness, but also the Panthers Foundation (who works closely helping kids with cancer) and the Hydrocephalus Association, each walked away with a check for $ 1,138.00!  Not a bad way to kick off the 2012 South Florida WALK being held in early November in Deerfield Beach, Florida. Thanks to all our volunteers who participated that night!

Eileen Rodger, South Florida WALK Chair

Meet Team Alex

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.

Wyatt Barris:

When I was bullied due to hydrocephalus, I tried to inform the person about my condition. I taught him about what caused it and explained that he could obtain hydrocephalus through a car accident or sport injury. When I informed him about how hard it is to live with hydrocephalus he stopped bullying me.

Nicole Padron:

This bullying business is getting way out of control. No one deserves to be treated with such hatred. We are all people, nobody is perfect and no one is any better than the other. So the next time you or someone you see is bullying an innocent person, just think of all the things you could be bullied for, and how horrible it would make you feel. For those who are being bullied, please just stay strong and know you are a beautiful person no matter what anyone else says.

Helpful resources:
•    The American Association of People with Disabilities (AAPD)
•    30 Seconds: AAPD’s Campaign to Stop Bullying
•    Teens Health:
•    StopBullying.gov:
•    American Academy of Children & Adolescents Psychiatry:
•    PACER Center’s Kids Against Bullying
•    PACER’s National Bullying Prevention Center
•    PACER Center Teens Against Bullying

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.

Tribute to a Passionate NPH Physician Advocate — The Passing of Harold O. Conn, MD

By Marvin Sussman, PhD

Harold O. Conn, MD, a world renowned liver specialist (Hepatologist), author and a pioneer in the basic understanding and treatment of advanced liver disease, died on Oct. 9, 2011 of natural causes at age 85 in Pompano Beach, FL.  Dr. Conn was a physician and 50-year faculty member at the Yale University School of Medicine.  He wrote more than 400 peer-reviewed articles for national medical publications about hepatic encephalopathy, detailing lethal liver diseases.  His unique sense of humor made these articles more enjoyable.

Dr. Conn earned BS (1946) and MD (1950) degrees from the University of Michigan and interned at the Johns Hopkins Hospital in Baltimore.  He was the chief resident at Yale-New Haven Hospital, earning a two-year fellowship with Dr. Gerald Klatskin, a pioneering Hepatologist. Dr. Conn later established a liver unit at the West Haven Veterans Administration Hospital and worked closely with Dr. Klatskin for over 30 years. Today, more than 100 Klatskin or Conn trained Hepatologists are scattered throughout medical centers around the world.  One of his greatest professional accomplishments was “The Histopathology of the Liver” by Klatskin and Conn, published in 1995. This book, a benchmark reference for the diagnosis of chronic liver diseases, was Dr. Conn’s last big project until he was diagnosed with a condition that was unknown to him, normal pressure hydrocephalus (NPH).

Dr. Conn’s health began to fail shortly after his retirement; and he had difficulty walking. Over the next decade, with a misdiagnosis of Parkinson’s disease, he developed other symptoms, including loss of short-term memory and a decrease in responsiveness, reaction time, and mental sharpness. A second opinion by a young neurologist in 2003 revealed the correct diagnosis of NPH. A neurosurgeon drained 60 milliliters of cerebral spinal fluid, and his symptoms vanished. A shunt was implanted, and the symptoms were controlled.  At age 78, Dr. Conn passionately launched himself into a study of the disease, which was identified in 1965 by his friend, Salomon Hakim, M. D., Ph. D. He became an expert spokesperson for NPH awareness, publishing articles in medical journals and appearing on national radio and TV programs.  A YouTube presentation by Dr. Conn may be viewed at:

http://www.youtube.com/watch?v=XwzRBP86vZI

A 2008 paper in the Yale Journal of Biology and Medicine by Dr. Conn and Francis M. Lobo, M.D., demonstrated that a significant lack of awareness of NPH remained among physicians surveyed:

“What Do Physicians Know About Normal Pressure Hydrocephalus and When Did They Know It? A Survey of 284 Physicians”

Harold O. Conn, MD and Francis M. Lobo, MD

As a Good Samaritan, Dr. Conn enthusiastically made himself available to advise patients and the families of friends about the diagnosis and treatment of the condition.  In the ensuing decade he wrote a dozen meaningful articles about NPH, its prevalence and heredity, and he also appeared on national radio and TV programs.

Personal Perspective on Harold O. Conn’s Interest in NPH

By Carlos Hakim, Ph. D

Harold Conn, M.D. contacted me by letter in December 2003.  This was a few months after his diagnosis of normal pressure hydrocephalus and the implantation of a shunt, resulting in his successful recovery from this disease. Coincidently, his winter home was in Pompano Beach, Florida, only five minutes away from my parent’s winter home. A month later, when my father, Salomon Hakim, M.D., Ph.D. was in Florida, the three of us got together. This was the beginning of what would become a warm and fruitful friendship during the next seven years. As Dr. Conn would frequently state, he was the newly adopted member of the Hakim family and their ongoing research program.

Dr. Conn’s interest in NPH grew tremendously, to the extent that he gave up his specialty of hepatology (liver disease) and devoted his new career as an amateur “NPHologist”. His two new primary goals in his life surrounded NPH. First, he wanted to learn everything he could about NPH. Second, he wanted to make as many practicing physicians as possible aware that NPH is not a rare disease and that in most patients it is reversible, even when it is in its terminal stages.

Harold Conn was very impressed with Salomon Hakim’s description of NPH in 1964, which at that point was an unknown disease. He was captivated by the half-century of work produced by the Hakims and coworkers, including published articles and the creation of several implantable shunt-valves. These valves permitted precise and extrinsic control of the CSF-systemic shunt pressure, restoring virtual normal life to thousands of patients who would otherwise be disabled or deceased.

A very important aspect of Harold Conn’s contributions was the fact that his observations of NPH were from his perspective as a physician with the illness. When Salomon Hakim met Harold Conn in 2003, Dr. Hakim mentioned that Dr. Conn was the first physician with NPH that he had met, and that he thought his medical training would have given him different insights from a non-medically trained patient. Indeed, they did. As an experienced academic physician with a lot of free time, he saw the opportunity to study NPH, a poorly understood, and not fully accepted, but reversible illness and he accepted the challenge.

Even though Dr. Conn learned that some experts doubt the existence of NPH and that the efficacy of shunting is questioned by many neurologists and neurosurgeons, he promptly abandoned his interest in the liver and dedicated his new life to making NPH a familiar term for physicians and lay people.  Additionally, he commented on the shunt complications that he experienced. He learned about NPH the hard way; he developed it.  Dr. Conn published several articles and lectured about NPH, including, among others:  “Normal Pressure Hydrocephalus: Case Report by a Physician who is the Patient with Observations of the Patient”.

At the time of his death, he was quite advanced in the process of writing a book on NPH and his experiences with it. Dr. Conn was also beginning to organize a symposium on NPH to commemorate the 50th anniversary of the initial description of the condition (March 10, 1964).

I greatly enjoyed the numerous meetings and discussions we had. He was an avid writer and his enthusiasm with this subject was clearly displayed in his accomplishments during the years he dedicated to NPH. A few months before his death, I mentioned to him that I greatly admired his dedication and stamina and he responded:

“After a decade of depressing diagnoses I didn’t immediately accept that I had this relatively new, mysterious, reversible illness until my neurosurgeon had performed a lumbar puncture that induced an instantaneous, miraculous, remission.  I had had difficulty climbing onto the gurney, but 10 minutes after the drainage of 60 ml of spinal fluid had started I could walk again.  It was such an immediate, dramatic change that I, as an objective scientist, who does not believe in casual miracles, did not believe that it could have occurred so rapidly.  As an objective observer I assure you that this miracle did occur.  Immediately after the CSF drainage I could again walk normally and felt and acted like my old self.  For the past seven years I have enjoyed every day the miraculous results of my shunt procedure”.

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

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.

We encourage people to hold a small neighborhood WALK around the block or even host a BBQ or other small gathering in place of attending an HA WALK event. By registering on the site participants will receive a personal online fundraising page where they can send emails to friends and families to promote the cause and raise money.

Individuals registered for the Virtual WALK will be eligible for the WALK T-shirt as well as other incentive prizes offered to all WALKs. Once an individual has finished fundraising and completed his or her small event we ask that people contact HA to share their connection to hydrocephalus and describe the walk or activity they held.

Last year we had participants from California, Texas, South Dakota, Virginia, Connecticut, Florida, Mississippi, New Jersey, Oklahoma, Pennsylvania, Virginia, Illinois, Indiana, and Maine. If you cannot find a WALK  near you, we hope you will join the Virtual WALK community this year! Please contact Jordan at jordan@hydroassoc.org or 888-598-3789 ex13 if you have any questions or click here.

Register Today

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