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April 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


We here at the Hydrocephalus Association (HA) spend a lot of time talking about the work we are doing to fund research, as well as all the work we do to support patients and families affected by hydrocephalus. There is another part of HA's mission that, frankly, we don't talk about enough: advocacy. 


In 1984, 6 medical professionals came together to serve as medical advisors to our fledgling association. Our Medical Advisory Board (MAB) now has nineteen esteemed medical professionals that work closely with our staff to support the educational needs of our members as well as help guide our research vision. As part of our interview series in commemoration of our 30th anniversary, Ashly Westrick, Research Manager, sits down with Dr. Michael Williams, MAB member and co-chair of our recent national conference, "Getting to the Heart of Hydrocephalus".
Youth historically bring a wave of energy and creativity in movements and in organizations. Our young adult and teen community is no different. Our intern, Jessica Ford, sits down with Haylea Lynn Blank, Teens Take Charge (TTC) member, to talk about growing up with hydrocephalus and her thoughts on the Hydrocephalus Association.
This year the Hydrocephalus Association (HA) commemorates our 30th anniversary but did you know that this year our San Francisco WALK will celebrate it's 20th WALK event? In 1994 a small group of dedicated people affected by hydrocephalus gathered to walk across San Francisco's Oakland Bay Bridge. Their purpose: to unite the local hydrocephalus community to raise awareness of this life altering, potentially life threatening condition, and to raise money for the Hydrocephalus Association's education and support services.  Randi Corey, our National Director of Special Events and Volunteer Support, sits down with Cheryl Merrell, our HA WALK Chair in Fresno, California, to talk about volunteering for HA, starting and chairing a HA WALK, and other thoughts about the organization.
Our history as an association is a reflection of the richness and diversity of the engaged and committed members of our community. That is all of YOU...all of US! As we continue our interview series commemorating our 30th anniversary, we chat with Angela Lacey. Angela was 44 years old when she began having acute headaches, intermittent incontinence, and kept falling at work. This prompted her to see her primary care physician and convince him to order an MRI. She knew in her gut something was not right. She was diagnosed with normal pressure hydrocephalus (NPH) but is currently not treated, only monitored. She is now 45, is a mom to her son Ryan, and continues to bring her humor and positive attitude to living life with hydrocephalus.

Development Update

Cynthia Solomon and I have a confession to make: Whenever we hear about a new medical breakthrough for treating some complex health condition, we immediately think of us and wonder: When will it be our turn? 


Support and Education Update

This year the Mary Smellie-Decker award goes to Nadine Nielsen, ARNP, Division of Pediatric NeurosurgerySeattle Children's HospitalThe Hydrocephalus Association (HA) with the American Association of Neuroscience Nurses (AANN) created the annual award in 2010 to honor Mary Smellie-Decker, RN, MSN, PNP, for her work as a staff neuroscience nurse, nurse practitioner, and member of the Hydrocephalus Association Medical Advisory Board. As one of the first neuroscience nurses in the country, she had a proven record of mentorship. The scholarship not only honors Mary, but aims to inspire others to continue her legacy of excellence in patient care and professional mentorship.



We asked the following question on our Facebook Page: 


"Many of us work with a team of health care providers. What are your top three tips on how you communicate with them to be an assertive and effective member of the team?"


We received some really valuable input and feedback. Read what some of you shared with us. 

The brain is a fascinating and complex organ. It is responsible for senses, movement and control, emotions and feelings, language and communication, thinking and memory. Research of the brain and understanding the inner workings of the brain will help us to learn about the mechanisms of certain neurological conditions, including hydrocephalus. Increasing our own knowledge of the brain helps us understand our own bodies better and helps us have informed conversations with our doctors, be it as a patient or a caregiver. Learn more about the brain in our two-series blog.
When there is an injury to the white matter of the brain at birth or before birth, it can cause a comorbidity of both hydrocephalus and cerebral palsy. The Mayo Clinic defines cerebral palsy (CP) as a disorder of movement, muscle tone or posture that is caused by injury or abnormal development in the immature brain, most often before birth. 

As many young adults in our Teens Take Charge (TTC) program prepare to take their ACTs and SATs, we wanted to take a moment to put your minds at ease with some helpful suggestions, tips and insight from one of your fellow peers, Madeleine Darowiche.

 Research Update

A recent study has shown that a specific type of neonatal hydrocephalus can be caused by defects in cellular signaling pathways. The study, out of the University of Iowa, is being led by Val C. Sheffield, MD, Ph.D, and his research team using a mouse model of Bardet-Biedl syndrome (BBS). 


Read More 


The Hydrocephalus Association strives to support research which will help advance diagnosis, treatment and outcomes of patients with hydrocephalus. As of 2011, we have raised 2 million dollars for research. But where does that money go? One place is our Mentored Young Investigator (MYI) grant program, through which we aim to fund and encourage young researchers in the field of hydrocephalus. Since 2009, we have funded seven MYI's. The work our MYI's have conducted is both substantive and insightful, and HA wants to take the opportunity to showcase their fantastic contributions to hydrocephalus research. We begin with Sonia Podvin, Ph.D, a postdoctoral scholar at the University of California San Diego, who was one of two recipients of the Hydrocephalus Association 2011 Mentored Young Investigator Award. 



Our 2013 Research Award in Cerebrospinal Fluid Production, Flow and Regulation Therapeutics and Diagnostics in partnership with the Rudi Schulte Research Institute (RSRI) is in full swing. Complete applications were due March 1st, 2013. We received a total of 13 proposals and are enthusiastic about the science and the dedication of the investigators to hydrocephalus research. 


HA attends Health Research Alliance Members' Meeting

Hydrocephalus Association CEO Dawn Mancuso and Research Manager Ashly Westrick learned about alternative funding models for patient research at the Health Research Alliance (HRA) Members' Meeting held at the Howard Hughes Medical Institute in Chevy Chase, Maryland. 


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! 

Two WALK Chair Trainings, One Great Event!


New WALK Chairs and Veteran WALK Chairs met in Charlotte, North Carolina to kick of the 2013 WALK season. Randi Corey, our National Director of Special Events & Volunteer Support, hosted our weekend training session with the help of Michael Ticzon, our Special Events Coordinator. Our new WALK Chairs met the weekend of February 9th for a comprehensive training on organizing a local WALK. Topics covered included WALK basics, event day logistics, securing corporate sponsorship, and WALK Committee structure. Our Veteran WALK Chairs came together the weekend of March 12th to review WALK logistics and share experiences, tips, and ideas for growing their current WALK. They were joined by CEO Dawn Mancuso and Director of Development Aisha Heath. Our national WALK program is 100% volunteer-led. We are excited to welcome new WALK Chairs and thank all of our WALK Chairs around the country!


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
Capt. Mark Kelly Keynotes Brain Injury Awareness Conference


NBC 7 San Diego reports that Captain Mark Kelly spoke at the annual Brain Injury Rehabilitation Conference in Carlsbad, CA. He and his wife, former U.S. Representative Gabrielle Giffords, know first hands the impact of traumatic brain injury and recovery after she survived a shooting in 2011.

Online Presentation: Could Your Alzheimer's or Parkinson's Diagnosis Really Be NPH? 


Memorial Hermann-Texas Medical Center hosts a recorded presentation by Dr. Dong H. Kim, director of the Mischer Neuroscience Institute and chief of neurosurgery, detailing the diagnosis of normal pressure hydrocephalus.

Wife Fights for Husband's NPH Diagnosis 


Houston's ABC affiliate KTRK reports on Ron Shillcutt, a Houston resident initially diagnosed with dementia and then found to have Normal Pressure Hydrocephalus (NPH).

New Gravitational Shunt Valve Hits Market 


Aesculap 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.

Rhode Island NBC channel 10 shares Roberta Healy's story of being living for years with undiagnosed with Normal Pressure Hydrocephalus (NPH).

The International Federation for Spina Bifida and Hydrocephalus (IF) hosts it's 24th international conference "Unite and Share" on June 28 and 29, 2013, in Izmir, Turkey. The conference will bring together healthcare professionals and individuals with spina bifida and hydrocephalus to share the latest knowledge and exchange their experiences.

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