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November 2012
In This Issue
The CEO's Corner
Support and Education Update
Development Update
Research Update
Advocacy and Awareness Update
Hydrocephalus in the News - Raising Awareness


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


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The CEO's Corner
HA CEO Dawn Mancuso


In the last year, we have talked a lot about the need for more research on hydrocephalus and the work of the association to raise money and provide funding for that research. In this month's blog, HA CEO Dawn Mancuso reviews our progress to date and highlights a meeting at the National Institutes for Health that focused on the current state of hydrocephalus research and funding for that research. 


Support and Education Update
October was National Bullying Prevention Month and we dedicated a blog to providing parents and youth with the resources they need to tackle this important issue. This powerful blog has stories of bullying from our own community and talks about the changing landscape of bullying from school hallways to the internet.


We recently asked on our  Facebook pageDid you know that papilledema and vision loss can occur due to increased intracranial pressure82% of those who answered said yes they knew about this issue. We explore papilledema further and provide informational resources. 

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October is Spina Bifida Awareness Month and also saw the celebration of the first World Spina Bifida and Hydrocephalus Day sponsored by the International Federation for Spina Bifida and Hydrocephalus (IF) and supported by the European Parliament. In this blog Luke Russell inspires our readers with his story of living with spina bifida and hydrocephalus.  



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A Survey for Parents of Special Needs Children


Parents of children with special needs are asked to participate in an online, anonymous survey about advocacy and resilience in parents of children with special needs. The research is being conducted by Dr. Sarah Taylor at California State University, East Bay, and Dr. Amy Conley Wright at San Francisco State University. 
To learn more about the study and to take the survey, please visit
Development Update
Join the Professional Member Society

The Hydrocephalus Association invites members of the medical and research community to join the Professional Member Society today. As a member, you will demonstrate your commitment to HA's mission and the thousands of families that we serve. To join, simply click the below link or call 301-202-3811 ext. 17 and we will complete your membership over the phone. 


 As the season of giving approaches, the Hydrocephalus Association will launch an eight week series entitled, So Many Reasons to be Thankful... So Many Ways to Give, to encourage members to include HA in their holiday gift plans. We will feature gift ideas that will help to further our mission and share a few remarkable "why I give" stories of members in the community that have supported the Association over the years.  We are so very THANKFUL to all who have supported our efforts and continue to do so throughout the year. 
Research Update
Dr. Jay Wellons, HCRN Investigator, Receives Degree and Takes New Position at Vanderbilt

Dr. Jay Wellons has joined the Vanderbilt University staff as a Professor of Neurosurgery at Vanderbilt University Medical Center and the Chief of Pediatric Neurosurgery at the Monroe Carell Jr. Children's Hospital. This follows the conferring of his MSPH degree by the University of Alabama, Birmingham. While in Birmingham, Dr. Wellons oversaw the Birmingham HCRN site and was the Principal Investigator on the line of studies on hydrocephalus due to intraventricular hemorrhage in premature babies. 


HA would like to congratulate Dr. Wellons on his completing his degree and on his move.


Read the HCRN Press Releases  

HCRN Investigator Wellons Moves to Nashville

Kudos Dr Wellons 

Dr. Curtis Rozzelle Joins HCRN

Dr. Curtis Rozzelle joins the Hydrocephalus Clinical Research Network. He will oversee the participation of Birmingham Children's Hospital. Dr. Rozzelle has published randomized clinical trials in hydrocephalus and we look forward to working with him on future HCRN studies.   



Read the HCRN Press Release  

Dr Curtis Rozzelle Joins HCRN as New PI 

Advocacy and Awareness Update


We are so pleased and honored to announce a new scholarship available through the Hydrocephalus Association's Teens Take Charge Program (TTC). Through a generous grant from the Medtronic Foundation, the Hydrocephalus Association (HA) has awarded five scholarships, in the amount of $1,000, to teens and young adults (ages 17 to 25) who are affected by hydrocephalus. 


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As Simple as a WALK Around the Block

As you may knowWALKs and Special Events are one of the Hydrocephalus Association's (HA) primary revenue sources, raising 60% of HA's total annual revenue in 2011. HA currently has 32 WALKs across the U.S. You say you don't have a local HA WALK?  Take a walk through your neighborhood and raise awareness and funds through our Virtual WALK program! 


Be a Virtual Walker

Hydrocephalus in the News - Raising Awareness
Country Music Concert Raising Funds for Hydrocephalus Association


Performing artist Angie Raulerson and her band, Jaguar Country, performed Friday, October 26 at Central Michigan University's Plachta Auditorium. Joining Angie was Michael Twitty, son of country legend Conway Twitty.


Read more 

Class Action Lawsuit Settlement Eases Rules for Some Medicare Coverage 


The New York Times reports on a proposed settlement of a nationwide class-action lawsuit that eliminates the requirement that beneficiaries show a likelihood of medical or functional improvement before Medicare will pay for skilled nursing and therapy services. 


Hydrocephalus Patients and Caregivers Increasingly Turning to the Internet 


Researchers at Children's of Alabama and the University of Alabama at Birmingham found that adults caring for children with hydrocephalus reported greater regular use of the Internet than the general population (91.7 percent compared with 74 percent)...


Sherman Alexie Talks to TIME Magazine About His New Book, Blasphemy 


Sherman Alexie is interviewed in the recent edition of TIME Magazine about his new book, Blasphemy. Mr. Alexie is an award-winning author and also has hydrocephalus.   


Shunting of NPH Does Not Inhibit Dementia Onset for All Patients 


A new study from Kuopio University Hospital, Finland found that around half of patients with idiopathic normal pressure hydrocephalus (iNPH) will develop dementia, despite responding to shunting. Many patients had other contributing factors.



Seattle Children's Hospital details the successful surgical procedure, Choroid Plexus Cauterization (CPC), performed by Dr. Samuel Browd, pediatric neurosurgeon and Director of Hydrocephalus at Seattle Children's Hospital, on Skyler Crow now 10 months old. 


World Health Organization Joins in the Celebration of World Spina Bifida and Hydrocephalus Day 


The World Health Organization (WHO) will host an Photo Exhibition in Switzerland for the International Federation for Spina Bifida and Hydrocephalus (IF) in celebration of World Spina Bifida and Hydrocephalus Day. World Spina Bifida and Hydrocephalus Day takes place on Thursday, October 25, 2012. 


Mount Sinai Brain Injury Research Center Receives $6.65 Million in TBI Research Grants 


The Mount Sinai Brain Injury Research Center has received two prestigious grants totaling $6.65 million to fund research on traumatic brain injury (TBI) over the next five years. The Centers for Disease Control and Prevention (CDC) and the National Institute on Disability and Rehabilitation Research are the two grantees.


University of Tennessee Alumna Raises Awareness for Chattanooga WALK 


Chara Crowley McLaughen, a University of Tennessee (UTC) alumna, is highighted by her alma mater UTC Chattanooga, for her dedication to organizing the 2nd Annual Greater Chattanooga Hydrocephalus Association WALK 2012 which will take place at Coolidge Park on Saturday, October 27th.


New Social Network for Kids with Special Needs 


CBS Los Angeles reports on a new closed social networking site created by the Starlight Children's Foundation. The site allows kids with special needs to connect, chat online, and support each other through various issues.


Good Samaritan Restores Faith in Bike Ride for Hydrocephalus 


Just when our cyclists hit their lowest point on the Spirit of America bike ride for hydrocephalus, a Good Samaritan comes to their rescue.


Pennsylvania declares November Hydrocephalus Awareness Month 


Pennsylvania State Representative Justin Simmons (R-Lehigh/Northampton) sponsored a resolution that designates November 2012 as Hydrocephalus Awareness Month in Pennsylvania.The resolution was unanimously approved.


Premature Babies from Low-income Families Face Higher Risks of Hydrocephalus 


Courtney Pendleton, of the Johns Hopkins School of Medicine in Baltimore, and colleagues conducted a study that found that premature babies born to low-income parents have a disproportionately high risk of developing posthemorrhagic hydrocephalus (PHH).


The Washington Post Features the Local University of Maryland Terps Super Fan 


The University of Maryland Terps football team has had a super fan named Joel Ryerson who has been attending practices and games for over 30 years. Joel is 51-years-old and has had hydrocephalus his entire life.


San Diego Ad Campaign Features Children with Special Needs 


San Diego-based toy company Infantino is creating an ad campaign, called "Everybody Plays," featuring children with special needs. The children in the campaign have special needs including Down syndrome, Hydrocephalus, visual impairments and congenital heart defects.


Young Pakistani Girl Develops Hydrocephalus After Gunshot Wound to the Head 


Time Magazine WORLD edition reports on Malala Yousafzai, a 14-year-old Pakistani girl, was shot in the head by Taliban gunman after championing the rights of girls to receive an education. She has been flown to Birmingham, England, for  medical care.


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