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June 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 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
Celebrating 30


It is hard to believe that it is already June. The first half of the year has passed by so quickly. I want to take a moment to thank all of the volunteers, which include our Board members, Medical Advisory Board members, WALK Chairs, nation-wide Support Group leaders, and members of our community, for participating in our weekly interview series commemorating our 30th anniversary. As the CEO, it has been both educational and inspirational to read your reflections on HA, your favorite memories with the association, and the direction you would like to see us move toward in the future.  

As we continue our interview series commemorating our 30th anniversary, Randi Corey, our National Director of Special Events and Volunteer Support, sits down with Jennifer Taylor, our HA WALK Chair in Atlanta, Georgia, to ask her about volunteering for HA, chairing a HA WALK, and other thoughts about our association. 
By Gilda Katz, MSW (retired) 
I am now 73 years old. On April 24, 2007, at age 67, I had a programmable ventricular peritoneal (VP) shunt inserted in my brain at St. Michael's Hospital, Toronto, because I had adult onset idiopathic Normal Pressure Hydrocephalus, also known as iNPH. The diagnosis took at least 2 years to make and involved several medical specialists, some of whom declared my symptoms psychosomatic. 
As we continue our interview series, we sit down with one of our earliest supporters and a current member of our Board of Directors, Dr. Marvin Sussman. Dr. Sussman has shared his wealth of knowledge regarding hydrocephalus and medical devices to our membership in the form of papers, articles, blogs, and presentations. He has also served on our Board of Directors for 13 years and, in that capacity, has advised on numerous internal projects that have moved the HA agenda forward.
As we continue our interview series, we sit down with Tina Daniels, the Hydrocephalus Association's (HA) support group leader in Owasso, Oklahoma. Tina was born with hydrocephalus and shortly after birth had a shunt inserted. Tina shares her experiences leading a support group and words of wisdom for caregivers and individuals living with hydrocephalus.

 Research Update

Joon Shim Ph.D., a recipient of HA's Mentored Young Investigator (MYI) award in 2009, has published an article about his findings: VEGF, which is elevated in the CSF of patients with hydrocephalus causes ventriculomegaly and ependymal changes in rats in the journal Experimental Neurology. Dr. Shim's study investigated the role that vascular endothelial growth factor (VEGF) could play in the development of hydrocephalus. The data from the study supports the idea that VEGF was elevated in patients with hydrocephalus compared with controls. This indicates that VEGF may be a useful biomarker for hydrocephalus.  The clinical relevance of this work is that anti-angiogenic drugs may be useful in patients with hydrocephalus. 


At HA, we strive to encourage the work of young researchers in the field of hydrocephalus. We are thrilled by the recent publication of one of our MYIs and we congratulate Dr. Shim on his accomplishment. 


Link to Dr. Shim's Study


Why is the BRAIN Initiative needed? How will it work? 


The National Institutes of Health (NIH) will hold four meetings open to the public to discuss the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative. 


Support and Education Update

We recently asked on our Facebook Page: How many components do you think a shunt system has? We were so pleased to see 87% responded with the correct answer. 


Yes, shunts typically consist of three major components. 1) An inflow (proximal or closer to the inflow site) catheter, which drains cerebrospinal fluid (CSF) from the ventricles or the subarachnoid space; 2) A valve mechanism, which regulates differential pressure or controls flow through the shunt tubing; 3) An outflow catheter, which runs under the skin and directs CSF from the valve to the abdominal cavity, heart or other suitable drainage site. 


To better understand shunt system components, valve mechanisms, most common shunt systems, overdrainage control devices, Siphon-resistive devices (SRD) and the different symptoms of malfunction and/or infection we are pleased to launch a "Shunt Systems Page" on our website. We encourage everyone to read and share the page with family, friends and your health care providers. 


Knowledge is power! 



On Friday, May 17, 2013, HA provided information regarding the proactive decision on the part of Codman to recall any CODMAN® CERTAS™ Programmable Valves in stock at hospitals and medical facilities. As a follow up to the initial announcement, HA spoke with members of our Medical Advisory Board (MAB) and with a vice president from Codman Neuro about how the recent recall of CODMAN® CERTAS™ Programmable Valves, also known as shunts, relates to patients.

"I know that there are thousands of kids just like me dealing with the same things that I am, and it is my hope that my documentary will be able to help them know that they are not alone." - Liz Holthouse 
Elizabeth Holthouse is a senior at Willard High School in Willard, Ohio. For her senior project, she made a video documentary about her life called "Normal on the Outside," which includes the story of her complicated medical history, and candid interviews with her sisters about Liz's struggles and triumphs growing up. Since posting the documentary on YouTube in January, Liz has had over 6,700 views, including from many teens about how they relate to her story. HA sat down with Liz to interview her about her experience making the video and the message she wants to send to the world. 
"When we come close to those things that break us down, we touch those things that also break us open. And in that breaking open, we uncover our true nature." ~Wayne Muller
Rachel Katz, a member from our community, shares how the lessons learned as a Zen Hospice Project volunteer were reinforced after her recent shunt revision. She is both honest and inspirational. 

High School graduation is here. A handful of members from our community excitedly leave behind the hallways, locker rooms, and cafeterias of their high schools and transition to the next phase of their lives, be it a college campus, a job, travel, or a well-deserved sabbatical. HA takes our hat off to all of you...and also takes a moment to highlight a senior who has made an impact in her own community and in our larger hydrocephalus community.

Development Update
Every Member Campaign - Renew Today!


If you have not sent your 2013 membership commitment, please do so by clicking here. Your membership dollars go a long way in the fight against hydrocephalus. To renew over the phone, please contact us at 301-202-3811 ext. 17.


Renew Your Membership Today! 

Advocacy and Awareness Update
Our 2013 HA WALK Season Begins!


Welcome to the 2013 HA WALK season! Our new year of HA WALKs and special events is underway. We are pleased to announce that we have 33 WALK sites this year plus the Virtual WALK, for people who don't have a HA WALK in their area. Although the first WALK on the schedule is Portland on June 15th, many WALKs already have launched their web page. People are registering to participate and using HA's online fundraising tools to raise money. It's never too early to start. 


View our 2013 WALK Schedule HERE! 

On Sunday, May 19, 2013, Team Hydro swam in the 21st annual Alcatraz Sharkfest Swim, a swim from Alcatraz Island to Aquatic Park on the shores of the city of San Francisco, CA. Team Hydro brought together 75 swimmers ranging in ages from 12-62 to brave the grueling, cold, open water of the San Francisco Bay for this 1.5 mile swim. As of swim day, the team had raised over $23,000, with the expectation of raising at least $50,000. To date, Team Hydro's efforts have increased awareness and contributed over $323,000 to hydrocephalus research! 
Read more and watch an interview with Peter Finlayson and 2012 Gold Medal Olympic water polo team member, Jessica Steffens. 

Hydrocephalus in the News - Raising Awareness
Young Boy Embodies Panhandle Spirit


Dillon Wades was born with cerebral palsy, epilepsy, and hydrocephalus, for which he has 2 shunts. ABC 7 affiliate highlight the Wades family and their sons, Dillon and Connor, as examples of the Panhandle Spirit.


A UCLA Newsroom press release details the findings of life scientists from UCLA and Australia showing that when the brain's primary "learning center" is damaged, parts of the prefrontal cortex take over. The findings could help in the development of new treatments for Alzheimer's disease, stroke and other conditions involving damage to the brain. reports on ten-year-old Casey Wray of Colonial Heights, VA, who was given an all expense paid trip to to New Jersey to see WWE's WrestleMania by the Make-A-Wish Foundation. Casey has hydrocephalus and, on the trip with his family, met other families from all over the world, including another little boy from Kansas with hydrocephalus.


The Doings Clarendon Hills newspaper, a publication of the Chicago Sun-Times, reports on 10 year-old Jayne Crouthamel, Easter Seals Youth Ambassador, who captivated audiences at the DuPage and Fox Valley Region annual gala..


The Minneapolis Star Tribune reports on our very own Olivia Maccoux who has shone as a star athlete. Park Center high school classmates have dubbed her the 'Iron Athlete' for her incredible athletic performances and perseverance.


New Vision, a Ugandan newspaper, reports that health estimates show over 2,500 new cases of hydrocephalus are reported each year. Since treatment can be cost prohibitive, Johnson Derek, the Executive Director for CURE hospital in Mbale, states that they have developed a way to assess families ability to pay and are providing children much needed medical help.

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