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


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

of hydrocephalus'  


Upcoming HA Events 
Never sleeping,
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.
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 CEO Dawn Mancuso


CEO Dawn Mancuso reports on HA's attendance at the Voluntary Health Leadership Conference, an annual event hosted by the National Health Council, and the the Rare Disease Day Conference held on the NIH campus. "Attending both of these events has given our organization a higher profile among policy makers and key research agencies, and has helped HA play an important role representing the entire hydrocephalus community in national conversations about the future of chronic disease research."


This year we commemorate our 30 year anniversary. Reaching a significant milestone such as a major anniversary, allows us as a community to recognize and celebrate our achievements and successes. It allows us to look back and see the impact we have made. We hope you enjoy learning about the rich history of our Association, represented in a timeline of our significant milestones.
To help us commemorate our 30 year anniversary, we will feature a series of interviews with members from our community, including members of our board of directors, our medical advisory board, our volunteer network, our scientific community, and, of course, our founding members. We hope that you enjoy these intimate and conversational pieces for both their educational content as well as their historical perspective. In our first interview we sit down with two of our founding members, Emily Fudge and Cynthia Solomon, to discuss the early days of forming the association, including their vision and their challenges.
Development Update

The Hydrocephalus Association is pleased to announce the launch of the 2013 Every Member Campaign. Last year's campaign was a great success, enabling HA to make significant strides with our advocacy and support work. We would like to thank all of our loyal donors who join us each year to move HA's agenda to end hydrocephalus forward. Please continue to stand by our side as we prepare to make 2013 a year of unprecedented growth in the fight against this condition.


Support and Education Update

The Hydrocephalus Association strives to offer the highest quality educational and networking events during our National Conference on Hydrocephalus, traditionally held every other year in cities across the United States. We are constantly looking for ways to improve the event. We hope you will take some time to share your thoughts and comments with us by completing our survey


This survey should only take about 10 minutes of your time. Your answers will be completely anonymous and by filling out the survey you will be entered into a drawing for an Amazon gift card. All survey results will be compiled together and analyzed as a group. Please note that any questions marked with an asterisk (*) require an answer in order to progress through the survey.


Thank you in advance for sharing your opinions with us on this important matter!

Over the last 30 years as we have been supporting, educating, connecting and informing families, we ask where we would be without our volunteers. Our volunteer leaders across the country have helped weave the rich tapestry of our HA history. As part of our interview series, Jennifer Bechard, our Support Group Liaison, sits down with our Virginia Support Group Leader, Annie Mason.
It is the 19th year for the scholarship program! We are very pleased to offer nine scholarships to teens and young adults affected by hydrocephalus. The amount of each award is $1,000. As of today, HA has awarded ninety-four scholarships to ninety-four deserving future leaders of our community. Applications are due April 1, 2013.

Introduction by Jennifer Bechard
Blog by Ashley Snyder


Are you getting ready to graduate from high school and take the much anticipated leap to head off to college? This is a very exciting time in one's life, but for individuals living with a complex medical condition like hydrocephalus it can also be a scary and intimidating step to take. Ashley shares some tips and tricks from her first-hand experience.


by Madeleine Darowiche


From fundraisers, awareness and advocacy events to sharing personal stories and experiences on our website and social media networks, teens and young adults across the country are banning together to create a network of support for each other. Madeleine Darowiche shares how Teens Take Charge has benefited her life.


by Teresa Smith


"I am amazed at how hydrocephalus has changed my life...but I would not change it. Here is my story." 


Teresa shares her journey of living with hydrocephalus, from her childhood through being an engaged and motivated teenager today.  

 Research Update

CEO Dawn Mancuso and Research Programs Manager Ashly Westrick attended the Rare Diseases Day Conference at the National Institutes of Health (NIH) in Bethesda, MD. The conference provided a unique opportunity to hear updates and engage in conversations with leaders at NIH, DHHS, FDA, DOD, the Social Security Administration, and other patient advocacy groups to find innovative ways to solve the challenges patients with chronic and rare diseases face every day. The conference coincided with Rare Disease Day, Thursday, February 28, 2013 - a day where we recognize individuals living with rare diseases and conditions in the United States and around the world.  

Read more 


From the NSF Dear Colleague Letter - Accelerating Integrative Research in Neuroscience and Cognitive Science (AIR-NCS) 


The National Science Foundation seeks proposals with the potential to transform neuroscience and cognitive science. We invite proposals that accelerate new integrative research across disciplines and across spatial and temporal scales of analysis in cognitive science and neuroscience. Such approaches will enhance our understanding of how the brain regulates the individual's biology, processes complex social and physical cues, and allows organisms to behave in and adapt to changing environments. 


Advocacy and Awareness Update
Announcing our 2013 WALKS!


The HA WALK and Special Events department is proud to announce the current 2013 list of HA WALK sites. This is just the initial list of WALKS - other WALK locations may be added to the schedule in the near future. 


We would also like to give a warm welcome to 5 new sites joining us this year. They are Baton Rouge/New Orleans, LA * Buffalo/Rochester, NY * Charlotte, NC * Columbia, SC * Los Angeles, CA. 


Finally, all you New Englanders, the Londonderry, NH WALK and Cambridge, MA WALK have combined to create the Greater New England HA WALK. This WALK will will encompass New Hampshire, Massachusetts and Rhode Island - as well as any other HA constituents in the New England area.


View our 2013 WALK Schedule HERE! 


Medtronic is recruiting runners from around the world who benefit from medical technology to participate in the eighth annual Medtronic Global Heroes program. The program is a dynamic example of how individuals with chronic health conditions are living full, active lives and inspiring others in the process. The program honors up to 25 runners from around the world who benefit from medical technology. In seven years, 159 runners representing 23 different countries have been honored.


Global Heroes will receive two paid entries into the 2013 Medtronic Twin Cities Marathon or the Medtronic TC 10 Mile and a travel package that includes airfare, lodging and meal expenses for the Global Hero and one guest. As in previous years, selected runners have the opportunity to name an organization to receive $1,000 on their behalf. 

Applications for the eighth annual Medtronic Global Heroes program will be accepted through April 26, 2013. 


Hydrocephalus in the News - Raising Awareness
New Gravitational Shunt Valve Hits Market


Aesculap, Inc. introduces a new gravitational shunt valve that allows for different pressure settings for the lying and the upright positions. The Miethke proSA valve is implanted in combination with fixed or adjustable valves.


Read more 

New Protocol with Adjustable Shunt Reduces Cases of Subdural Effusion 


Medwire news reports on a research study that shows that an adjustable Strata valve shunt set at the highest setting and slowly calibrated down in a patient being treated for idiopathic normal pressure hydrocephalus (INPH) reduces the cases of subdural effusion and shows improvement in gait and/or cognitive function.


Neurosurgeons Trained in Zimbabwe 


Twelve doctors and neurosurgeons in Zimbabwe were trained in the neuroendoscopic ventriculostomy surgical technique for the treatment of hydrocephalus. The Neurosurgical Education Development Foundation, led by Dr. Mahmood Qureshi, has been promoting better surgical treatment options leading to fewer shunt insertions in order to address the medical and financial constraints of many African countries.


Washington State Woman with NPH Misdiagnosed with Alzheimer's 


Everyday Health reports on the story of Judy Russell who was misdiagnosed with Alzheimer's for her memory loss. She was later diagnosed with Normal Pressure Hydrocephalus (NPH).


The American Academy of Neurology reports on a study of >Bardet-Biedl syndrome (BBS), originally published in Natural Medicine, that found that a form of neonatal hydrocephalus could be caused by cellular signaling defects. The condition could potentially be improved by giving lithium. The study is led by Val C. Sheffield, MD, PhD, professor of pediatrics and director of the Division of Medical Genetics at the University of Iowa Roy J. and Lucille A. Carver College of Medicine, and a Howard Hughes Medical Institute investigator.


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