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The HA's Mission is to: 'Eliminate the challenges
of hydrocephalus'
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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
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Many of us celebrated a holiday called the 4th of July here in the United States this past weekend. On the East Coast, the weather was beautiful, if a bit warm, meaning that many of us participated in the typical celebratory activities - family gatherings, an outdoor barbecue, fireworks displays, maybe time spent at a beach or a pool - all of which have become hallmarks of summertime fun. Yet, we all know there's a deeper, more somber meaning to this holiday - one where we remember that the freedoms we enjoy here in the United States were hard won, first with a vision set by a congress of people from all walks of life who shared a common goal, and secondly by the hardships of many who fought (and continue to fight) for that freedom.
Read More
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As we continue our interview series commemorating our 30th anniversary, we sit down with one of the newest members of our Board of Directors, Shannon O'Connor. Shannon joined the Board this past January. She is a Behavioral Medicine/Health Psychologist and is also a mother to son, Reece, who has hydrocephalus and was shunted at 3 months old. Shannon shares her thoughts on the Hydrocephalus Association and words of wisdom for other parents of children with hydrocephalus.
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Amanda Garzon, HA's Communications and Marketing Manager, opens up about mothering a child with hydrocephalus and shares her personal reflections on the association. Amanda's daughter, Gabriela, was born 3 months prematurely, weighing just under 2 pounds, and acquired hydrocephalus after a grade III intraventricular brain hemorrhage (IVH). She is now 13 years old and has two VP shunts to treat her hydrocephalus.
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Margaret Powers, our Houston WALK Co-Chair, sits down with Randi Corey as part of our 30th anniversary interview series. Margaret chaired last year's inaugural Houston WALK - without the assistance of a Co-Chair! The event was tremendously successful. Despite a deluge, this first-year event raised over $23,000 from more than 300 participants. In our interview, Margaret shares her thoughts about the Hydrocephalus Association and starting and coordinating a WALK.
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In 1994, the first Hydrocephalus Association scholarship fund was established by founding members Russell and Emily Fudge in memory of their son, Gerard. Our scholarship program is now able to offer nine scholarships annually to young adults with hydrocephalus. As part of our interview series, we sit down with Elizabeth Ann Norris, to talk about growing up with hydrocephalus and her thoughts on the Hydrocephalus Association. Elizabeth was the 2012 recipient of the Mario J. Tocco Hydrocephalus Foundation scholarship.
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Research Update
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On April 29, 2013, the Institute of Biosciences and Technology at Texas A&M University formally announced that researchers discovered a connection between a form of congenital hydrocephalus and the gene, Rnd3. The study is led by Jiang Chang, MD, PhD, associate professor in the Center for Translational Cancer Research and a prominent researcher focusing on the abnormal development of heart tissue and how it leads to heart failure. After identifying the significant finding for hydrocephalus among his study subjects, Dr. Chang attended a local Hydrocephalus Association support group meeting to meet individuals affected by hydrocephalus and to share his findings with the Association.
Read the Announcement
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James P. (Pat) McAllister, Ph.D., is the Director of Basic Hydrocephalus Research at the University of Utah. In 2011, he received a two-year Established Investigator grant from the Hydrocephalus Association. The journal article,"The role of the subcommissural organ in the pathogenesis of congenital hydrocephalus," recently published in Cell Tissue Research, details his research findings.
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This Research blog series is dedicated to highlighting the current studies of the Hydrocephalus Clinical Research Network (HCRN).
Our blog series continues with a discussion with St. Louis Children's Hospital HCRN principal investigator, David Limbrick, MD, PhD. Dr. Limbrick is an Assistant Professor of neurological surgery and pediatrics at Washington University in St. Louis. He is the principal investigator for the HCRN study, Biomarkers in Post Hemorrhagic Hydrocephalus, which collects cerebrospinal fluid (CSF) and analyzes it for potential biomarkers.
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With the recent moves of HCRN investigators Dr. John Wellons to Vanderbilt University and Dr. John Kestle to University of British Columbia, HCRN has decided to expand its network from seven to nine centers to incorporate their respective hospitals in HCRN research. Each center will begin its trial period immediately which involves adding patients to the HCRN registry as well as participating in the HCRN Quality Improvement Study for post surgical infections. Dr. Kestle will continue in his role as Chairman of HCRN and Dr. Wellons will continue to be the lead Principle Investigaor on the Study of Post Hemorrhagic Hydrocephalus which is nearing the completion of its accrual of patients.
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Most people know that advances in eye movement tracking have impacted mobile technology and video games immensely in the last few years. In the Departments of Ophthalmology and Neurosurgery at New York University, similar eye-tracking technology is being developed to enable a correlation between eye movements and brain function. Since ancient Greek times, and contemporary with the earliest writings and pictures of hydrocephalus, there have been descriptions of abnormal eye movements in people afflicted by hydrocephalus.
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Support and Education Update
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The Hydrocephalus Association is pleased to announce the 2013 Hydrocephalus Association Scholarship Awards recipients. We would like to thank everyone who applied for a scholarship and congratulate those of you who were selected this year. Since the scholarship program was established in 1994, HA has awarded 103 scholarships to 103 deserving future leaders of our community. We are very proud to honor these remarkable young adults. Despite the tremendous challenges and obstacles with which they are faced, these students continue to excel in the classroom, volunteer and give back to help their community, and inspire their peers and all of us.
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We asked our Facebook page: "Do you use a medical alert card/bracelet for your shunt or Endoscopic Third Ventriculostomy (ETV)? If YES, tell us, what kind you use and what information you put on it." We received some excellent feedback from parents, caregivers and individuals living with hydrocephalus. Many utilize several forms of medical IDs, however, there were many individuals who were not aware that something like this is available or the importance of it.
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The article in The Saturday Evening Post, "Life in Jeopardy: A Brain Disorder Often Missed," plays an important role in our continued efforts to educate the public and raise awareness about the form of hydrocephalus called Normal Pressure Hydrocephalus or NPH. While the condition was identified over 50 years ago, there is little research into the condition, which so far is the only known reversible form of dementia but it is often mistaken for Alzheimer's or Parkinson's Disease. The article details the story of J.D. Cain who was initially diagnosed with Parkinson's disease, and was later found to have NPH. After successful treatment with a shunt, his symptoms reversed.
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This blog serves as an educational supplement to our blog about a new study from New York University that will investigate the use of eye tracking technology to assess patients with hydrocephalus. Eye tracking technology utilizes the movements of the eyes to assess the function of the cranial nerves. In hydrocephalus, cranial nerves can be damaged due to intracranial pressure. The researchers hypothesize that analyzing the movement of the eyes could be used to detect hydrocephalus. This research utilizes the cranial nerves but what are the cranial nerves and which specifically help control the eyes?
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Afraid or embarrassed to let others know you have hydrocephalus? In her monthly blog, Madeleine Darowiche, Teens Take Charge Advisory Council member, shares her experience of telling her high school classmates about living with hydrocephalus.
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This past May, Wyatt Barris, Teens Take Charge Advisory Council member, walked in the Lamb Derby parade in Willows, CA. Willows is his home town, and walking for the Hydrocephalus Association and the Teens Take Charge program gave him the chance to spread awareness to people that he personally knows and grew up with.
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Development Update
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 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.
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| Advocacy and Awareness Update |
Portland Kicks Off Our 2013 HA WALK Season!
It was a beautiful day in Portland, Oregon, on Saturday, June 15th, when our 2013 WALK season officially launched with the 4th Annual Portland WALK. More than 500 walkers came out for the event. Annie Bany, a local singersongwriter best known for her alternative pop-country style, performed songs from her newly released album, Barefoot and Young. The WALK was started four years ago by Jerrod and Tara Miller whose son, Grant, was born with hydrocephalus. Annie performed as the walkers were coming in from the 2 mile walk. Moved by the event and her personal interactions with participants, Annie donated 100% of the proceeds of the sale of her CD to HA. She also accompanied young 11-year old Chase Swearingen as he spontaneously sang to the crowd at the end of her performance.
View our 2013 WALK Schedule HERE!
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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!
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Hydrocephalus in the News - Raising Awareness
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Tucson Boy Receives 4,600 Birthday Wishes
Tucson News Now reports that Jacob Mockbee received 4,600 birthday wishes from around the world after his father and fellow police officers in Tucson, Arizona, raised a Facebook challenge to have 1,600 cards sent to Jacob for his 16th birthday. Jacob lives with spina bifida and hydrocephalus.
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To help researchers understand the underlying mechanisms of traumatic brain injury in service members, the Department of Defense has established the world's first brain tissue repository.
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OurColoradoNews.com features the upcoming Denver WALK, led by Phyllis Rogers. 700 walkers are expected to attend the event to raise funds to support research and education to eliminate the challenges of hydrocephalus.
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NBC affiliate WCSH Channel 6 reports that the Robbie Foundation has donated a custom-made bed to young Kayleigh, who has hydrocephalus and seizures. She can now sleep safely at night.
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Zoey and Parker VanBaaks, ages 7 and 5 respectively, were both found to have hydrocephalus due to a chiari malformation. Their parents chose to have their surgeries on the same day.
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Chris Kain is a father committed to showing his daughter, Kallisa, the beauty of the world, despite physical challenges that arose from a complicated medical history that includes hydrocephalus, epilepsy, cerebral palsy and more. They recently hiked Zion National Park.
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