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August 2013
In This Issue
The CEO's Corner
Research Update
Support and Education Update
Development Update
Advocacy and Awareness Update
Hydrocephalus in the News - Raising Awareness

 

The HA's Mission is to: 'Eliminate the challenges 

of hydrocephalus'  

 

Upcoming Events 
ODE TO A PEDIATRIC NEUROSURGEON 
Never sleeping,
Family...Who?
Cries of children
Parents, too-
Breaking hearts
Brilliant smiles
Holding hands,
Sitting just awhile.
Eyes that tear
Hearts that ache
Wish you could fix
All who come to you this day.
Bone tired, never enough sleep,
Hugs from parents
And their children, keep
You forging on
Day by day
Praying you are helping
In some small way.
When in truth, all be told
You are a hero
Strong and bold
To the parents
And their children, too.
YOU,
Pediatric Neurosurgeon
Are OUR hero
By all that you do.

2008 Debby Buffa
All Rights Reserved


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The CEO's Corner
HA Board Member Takes New Leadership Role at the University of Utah

 

David Browdy has recently accepted the position of Associate Vice President for Finance and Chief Financial Officer for the Health Sciences Center at the University of Utah. Mr. Browdy leaves a successful leadership position spanning 20 years at the Feinberg School of Medicine at Northwestern University, where he most recently served as Senior Associate Dean for Finance and Administration and Chief Operating Officer. 

 

Mr. Browdy has been a dedicated and committed individual to HA, serving as the Vice Chair of the Board of Directors and Chairman of the Research Committee. Join us in congratulating Mr. Browdy on his new position at the University of Utah. We wish him all the best in his new role and new home.  

Our conferences are a chance for our teen community to come together and hang out real time - outside of the many technology screens that host Facebook, Instagram, Twitter, and texting. In this installment of our weekly interview series commemorating our 30th anniversary, our intern, Jessica Ford, sits down with David Walters, Teens Take Charge (TTC) member, to talk about TTC, the importance of our biennial conference, and his reflections on the Hydrocephalus Association (HA). 
 
 
Ten years ago, 60 people in Denver, Colorado, came together for Denver's first WALK. In this installment of our interview series commemorating our 30th anniversary, Randi Corey, National Director of Special Events & Volunteer Support, sits down with Phyllis Rogers, who is in her 10th year chairing the Denver WALK. She is HA's longest consecutive serving WALK Chair! Phyllis reflects on her drive to continue to chair the WALK and her hopes for the future of the Hydrocephalus Association (HA).
 
 
As we continue our interview series commemorating our 30th anniversary, we sit down with Dr. John Kestle, Head of the Department of Surgery at The University of British Columbia in Vancouver, Canada. Dr. Kestle is also a member of our Board of Directors, our Medical Advisory Board (MAB), and a founding member of the Hydrocephalus Clinical Research Network (HCRN). Dr. Kestle shares his thoughts on the current state of hydrocephalus research, founding the HCRN, and his reflections on the Hydrocephalus Association. 
 
 
As we continue our interview series commemorating our 30th anniversary, Jennifer Bechard, our Support Group Liaison, sits down with our Charlotte, NC, Support Group Leader, Summer Minchew. Summer's son was diagnosed with hydrocephalus at 14 weeks old. Summer shares her vision of creating a hydrocephalus community that supports one another and inspires each other to raise awareness about hydrocephalus.

Research Update

The Hydrocephalus Association is pleased to announce that the association is offering funding for an additional research grant in its 2013 grant cycle. This grant will help advance the priorities established in HA's 2012 research conference, Opportunities in Hydrocephalus Research: Pathways to Better Outcomes. After an extensive review process by our distinguished Scientific and Medical Review Committee, HA has selected Timothy Vogel, M.D., from Cincinnati Children's Hospital Medical Center, for his proposal, "Role of neural progenitor cells in the development of neonatal hydrocephalus."

 

Read More


Continuing with our Mentored Young Investigator (MYI) blog series, we want to highlight one of the 2009 recipients, Dana Moore, Ph.D. Her study entitled, "Quantitative measurement of ventricular volume and cortical atrophy to improve diagnosis of Normal Pressure Hydrocephalus (NPH)," aimed to improve diagnosis of NPH through imaging. NPH is a chronic neurological disorder in adults. It can be easily misdiagnosed as Alzheimer's disease (AD) and other forms of dementia.

 

Read More

 

The HCRN registry is a huge database collecting detailed information on children at the HCRN centers around the country. The information is entered in real time as children are treated, and continuously checked for accuracy. 

 

 

The International Society for Hydrocephalus and CSF Disorders (ISHCSF) held its 5th annual meeting June 28th - July 2nd in Athens, Greece. The ISHCSF was established to advance the art and science of the field of clinical care and research in hydrocephalus and CSF disorders, and thereby promote the best possible care for patients with hydrocephalus and CSF disorders. The meeting brings together hydrocephalus researchers from around the world to discuss the current state of research for all types of hydrocephalus. 

 

Support and Education Update
 

The Hydrocephalus Association is pleased to announce our 2013 Education and Support webinar series! This series will consist of four interactive, free webinars that are designed to educate our community on a variety of topics which include, but are not limited to, Normal Pressure Hydrocephalus (NPH), research, and shunt technology. We will be featuring presentations from medical professionals, researchers and many different individuals with a direct connection to hydrocephalus. 

 

 

From the travel journal of Gina Barbaro 

Entry #2: My Trip to Machu Pichu, Peru 

 

My blog posted on April 30, 2013, describes my preparation for a Peruvian excursion to the capital city of Lima, and the Andes Mountains, including Machu Picchu. It mentions that my review of the research literature furnished by the Hydrocephalus Association, and my consultation with a neurologist revealed that people with shunts traveling to high altitudes are at no greater risk of altitude sickness or complications related to their shunt's performance. This blog reports my experiences during my trip to Peru in May and my adjustment to its high altitudes. 

 

 

The Hydrocephalus Association is pleased to share some exciting research on the usage of gravitational shunt valves in idiopathic normal pressure hydrocephalus (iNPH). The study, published in the Journal of Neurology, Neurosurgery and Psychiatry in March 2013, features the Aesculap-Miethke proGAV Gravitational Shunt System. The study investigates whether gravitational shunt valves reduce the risk of overdrainage complications compared with programmable systems without gravitational valves for patients with iNPH. 

 

 

If you're new to buying healthcare, finding the perfect plan can be like trying to find the Wizard without having a yellow brick road to guide you to the Emerald City. While it might seem overwhelming, the changes made to the healthcare system by the Affordable Care Act aim to make finding a plan that suits your needs a simpler process. 


Being diagnosed with a chronic health condition like hydrocephalus at any age can be a life changing and frightening experience. In her monthly blog, Madeleine Darowiche, Teens Take Charge (TTC) Advisory Council member, talks about the social, physiological, and emotional changes and pressures teens typically face, and the challenges of adding a new diagnosis of hydrocephalus on top of that.
 
There are numerous challenges associated with being a high school athlete, and finding a balance between academics and athletics is often difficult for a young person to achieve. For Thomas Rodriguez, a teen living with hydrocephalus in Madrid, Spain, the challenge is precisely what attracted him to the sport of swimming. Our intern, Kaitlyn Petronglo, interviews Thomas about the lessons he has learned in the pool.
 
Development Update
 

Thanks to you, HA has become the nation's largest and most widely respected health advocacy organization devoted to meeting the needs of those affected by hydrocephalus. We would never have become the force we are today without the unyielding commitment of our members. If you have not done so, please take a moment right now to renew your commitment and make your annual membership gift to the Hydrocephalus Association. It will truly take every member to move HA's agenda forward. A donation of any amount will be used to support our community family and fight this condition together. Thank you for your commitment. 

 

Advocacy and Awareness Update
 2013 HA WALK Season is Hitting the Presses!

 

Our WALK season is well underway, with Denver and Detroit hosting their events this weekend. Our WALKS have been all over the news. If you haven't had a chance to catch some of the wonderful stories, please visit our In the News section on our website. Thank you to all the families who have been interviewed for various pieces around the country and, of course, thank you to our incredible WALK chairs. As a team we are raising our voices and creating awareness of hydrocephalus.

 

Visit In the News to read the latest articles. 

 

View our 2013 WALK Schedule HERE! 

 
Good Housekeeping magazine profiles 5 women across the country who are passionate about a cause that has touched their lives and highlights what they are doing to make a difference. The Hydrocephalus Association (HA) was so excited and proud when one of our HA WALK chairs and a committed mom was selected to be profiled in "Committed to a Cause: 5 Women Who Are Making a Difference." Cortney Pellettieri, mom to Max who is 6 years old and developed hydrocephalus when he was born, lives in the Los Angeles, California, area with her family. She is currently co-chairing the inaugural Los Angeles Hydrocephalus Association WALK with Tania Heise, Amber Milliken, Dan Solchanyk, and Jennifer Pope. 
Join Our 2013 HA WALKS on Twitter!
 
Do you use Twitter? If so, many of our WALKS will be tweeting on event day. Follow the fun! 

Participating WALKS will have a twitter account using the following naming convention: @HAWALK_location name. Denver, Detroit and Fresno already have established accounts, so use their current name to follow them. Search for and follow your local WALK. 

On event day, join in by tweeting! When you tweet, use the hashtags #HAWALK and #hydrocephalus. Don't forget to tag your local WALK and @HydroAssoc in your tweets so we can retweet. Tweet photos! 

Join these WALKS on Twitter: Atlanta, Anoka, Chicago, Denver, Detroit, FresnoLos Angeles, and Minneapolis
 
Hydrocephalus in the News - Raising Awareness

 

Boston Globe health reporter, Kay Lazar, shares the story of Jim Lambert's journey of misdiagnosed Normal Pressure Hydrocephalus, after an initial diagnosis of Alzheimer's.

 

King5.com reports on a group of Marines who ran 100 miles in 24 hours to honor their fallen and injured comrades. The event aims to raise money for soldiers that are suffering from post traumatic stress and traumatic brain injury. The money raised will go to One Mind for Research, a Seattle-based organization dedicated to curing the diseases of the brain and eliminating the stigma and discrimination associated with mental illness and brain injuries.

 

Eboni Graham with The Amarillo Globe News reports on the challenges both children and adults face living with hydrocephalus. She focuses on Noah Goswick, who acquired hydrocephalus from a brain hemorrhage after a premature birth, and Beverly Cobb, who lives with normal pressure hydrocephalus (NPH).

 

Jane Charmelo from The Lombardian and Villa Park Review Newspapers interviews Andrea O'Shea about her daughter Preslee's journey with hydrocephalus and her role as co-chair for the recently held Chicago WALK for Hydrocephalus. Preslee stole our hearts at our 12th National Conference in Bethesda, MD, when she joined Judy Schneider on the stage during her presentation.

 

Hillier Ignite, a philanthropic organization based in Virginia Beach, has awarded its first Lifesaving Innovation Award to InfraScan Inc. InfraScan is a medical device company that focuses on developing hand-held diagnostic devices based on near infrared technology for head injury and stroke assessment.

 

The Novato Advance reports on Shannon Dugdale who has spina bifida and hydrocephalus and, when not in the pool, uses a wheelchair. She has found a new freedom as a swimmer and is a valued member of her school swim team, the Novato Riptides. 

This email was sent to amanda@hydroassoc.org by blog@hydroassoc.org |  
Hydrocephalus Association | 4340 East West Highway, Suite 905 | Bethesda | MD | 20814