hydrocephalus

Hydrocephalus Support Groups Thrive

By Jennifer Bechard, Support Group Liaison Hydrocephalus Association Support Groups are off to a great start this year.  Each week, we are receiving calls or e-mails from enthusiastic, driven individuals determined to help others who are dealing with the challenges of hydrocephalus. Every child, adolescent, adult and family member has a different story but there […]

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New NPH Booklet Released

The Hydrocephalus Association’s Support and Education department is committed to keeping our hydrocephalus related educational materials updated. When you consider the scope of the material, booklets, fact sheets, directories, webpages and other e-resources, etc., you can appreciate that this is a process that never truly ends. So, whenever we begin to run out of a […]

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Team Hydro Takes Their Goggles to Chicago

On August 20th, 2011 Team Hydro will participate in the first annual Lake Michigan Sharkfest Swim in downtown Chicago. The team will race in memory of Kate Finlayson, who passed away in November of 2010 from complications related to her hydrocephalus. Funds raised from the team’s efforts support the Kate Finlayson Memorial Research Grant which […]

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American Idol’s Jennifer Lopez sheds a tear for hydrocephalus

Jennifer Lopez (J-Lo) tears up when American Idol hopeful, Paris Tassin, sings Carrie Underwood’s hit song “Temporary Home”. Paris dedicates the song to her beautiful daughter who was born with hydrocephalus and talks about how she is the best thing that’s happened to her. “When you sang, I really felt it … I knew [the […]

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Announcing the 2011 Scholarships

Hydrocephalus Association 2011 Scholarship Applications Available We are so pleased to start this New Year by announcing the new cycle for Hydrocephalus Scholarships. The Hydrocephalus Association (HA) awards each year eight distinguished scholarships to eight capable and promising young adults who have been dealing with the complexities and challenges of hydrocephalus. Please click here for […]

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2010 Hydrocephalus Association Resident’s Prize

2010 Resident’s Prize Awardee is Announced Every year, the Hydrocephalus Association awards a resident’s prize in neurology/neurosurgery to the most promising research paper relating to hydrocephalus.  The paper is presented at the Pediatric Section meeting of the American Association of Neurological Surgeons/Congress of Neurological Surgeons (AANS/CNS). The prize for 2010 went to Ramin Eskandari, MD, […]

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HYDROCEPHALUS WALK TIP OF THE MONTH – January 2011

The ABC’s of Corporate Sponsorship by Randi Corey, HA Director of Special Events The 2011 WALK season is already underway, which means that every Hydrocephalus Association WALK is actively seeking corporate sponsorship.  Where do you work?  Where does your spouse work?  Where do other family members (even extended family) work?  Because, that’s where you start […]

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Hydrocephalus Research Update – Announcing New Mentored Young Investigator Grants

“The Hydrocephalus Association is pleased to announce its Mentored Young Investigator research awardees for 2010.” Jay Riva-Cambrin, M.D., a pediatric neurosurgeon of the University of Utah and Primary Children’s Medical Center will lead a multi-center study across the Hydrocephalus Clinical Research Network (HCRN) study linking MRI to established and novel measures of neuropsychological outcomes in […]

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In Memory of Kate

On November 27, Kate Finlayson passed away due to complications from hydrocephalus and the many surgeries she endured to combat it.  She was, and remains, an inspiration for all of us dedicated to furthering the fight against hydrocephalus. Just 26 years old, Kate underwent more than 130 surgeries in an ongoing struggle to manage her […]

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HYDROCEPHALUS WALK TIP OF THE MONTH – December 2010

Double your donations…with Matching Gifts! by Randi Corey, Hydrocephalus Association Director of Special Events Thanks to many of you the Hydrocephalus Association had a significant increase in matching gifts for the 2010 WALKs – a great trend that we would like to sustain!   Matching gifts…you may have heard the term before but may not be entirely […]

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Hydrocephalus WALK 2010 – Photos

Below are a small sample of pictures from our 2010 WALK season.  Once again, people from all across the country came together to create awareness of hydrocephalus and raise funds for research while having a great time.  Hence the smiles.

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Hydrocephalus Teens Take Charge – Haylea Speaks Up!

Haylea Lynn Blank : How has having hydrocephalus impacted my life? I was born premature at twenty-six weeks of gestation. I was one of twins. We were both born at twenty-six weeks because my mom went into premature labor, which could not be controlled with medicine in the hospital. Due to being born early, I […]

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Support Takes Hydrocephalus by Storm…

by Jennifer Bechard, HA Support Group Liaison As you may or may not know, the Hydrocephalus Association started out as a support group, and providing support has remained one of our major services. When a person is first diagnosed with hydrocephalus, receiving high quality education and support can be critical.  Education and support help people […]

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Hydrocephalus – Team Hydro Speaks Up

by Pete Finlayson There is an old story about a beach.  It was the morning after a storm and the water had retreated back to its usual levels.  A young man was jogging on this beach.  He moved quickly and athletically along the sand, watching the waves crashing on his left as he ran.  On […]

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Thank you to 2010 Walk Chairs!

By Randi Corey, Director of Special Events The Hydrocephalus Association would like to extend its most sincere thanks to all of its 2010 WALK Chairs!  HA’s 25 WALKS across the U.S. had more than 7,500 walkers raising over $625,000!  6 of HA’s Walk sites were new this year, including Londonderry (NH), Barrington (RI), Louisville (KY), […]

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WALK TIP OF THE MONTH – November 2010

COMPANIES AND CORPORATIONS – INCLUDE HA WALK SPONSORSHIP IN YOUR 2011 BUDGET! by Randi Corey, Hydrocephalus Association Director of Special Events Many companies and corporations are finalizing their budgets for 2011, including their marketing and charitable giving line items.  Now is the time to include a Hydrocephalus Association WALK Sponsorship for 2011.  With a wide […]

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A Magical, Memorable Event

By David Moore, Hydrocephalus Association Director of Development Puff the Magic Dragon would have been proud. On Sunday, October 24, legendary folk singer, and author of the aforementioned song, Peter Yarrow (of Peter, Paul and Mary) performed an intimate concert to benefit the Hydrocephalus Association’s Research Initiative. The concert was held at the stately and […]

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Teens Take Charge – Olivia’s Story

My name is Olivia, I’m 14 and have been living with hydrocephalus since birth. I was born at only 29 weeks, which caused a bilateral grade II intra-ventricular hemorrhages (also known as brain bleeds), which developed post hemorrhagic hydrocephalus (excess spinal fluid in the brain). I underwent surgery to receive my first VP shunt at 10 […]

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Hydrocephalus Expertise at Your Fingertips — 24/7/365

We at the Hydrocephalus Association are proud to announce our new online Hydrocephalus Resource Library.  For decades now, our hydrocephalus support professionals have been providing education, information, and support to those living with hydrocephalus, their families and loved ones, and professionals working in the field.  We know well how many burning, unanswered questions there are […]

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Windy WALK in ‘The City’

by Tom Smith, Adult Services & Outreach Coordinator Windy, wet, cold and rainy are all excellent words.  And as often as not, they’re adequate to convey an image–a very familiar image, particularly if you happen to live in San Francisco.  And particularly if you happened to attend our WALK on Sunday! In truth, these words […]

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Famed Folk Music Artist to Perform Benefit Concert

Take a stroll down memory lane while helping the future of hydrocephalus research by attending Peter Yarrow’s Concert for Hydrocephalus. This family-friendly event will take place on Sunday, October 24, 2010 at 2:30 p.m. The concert will be held at the Residence of the Australian Ambassador in Washington, D.C. Peter Yarrow, of the legendary folk […]

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Research Update

by Eleanor Young, Research Associate As part of its mission to eliminate the challenges of hydrocephalus, the Hydrocephalus Association (HA) launched a Research Initiative in 2009 to fund grants to support worthy, innovative and relevant research. The  Initiative aims to fund research that improve the quality of life for people living with hydrocephalus and finds […]

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Announcing Teens Take Charge

For Immediate Release Teen Advocacy Program Launched for Hydrocephalus Hydrocephalus Association Engages Teens in Fight for a Cure San Francisco, CA (October 18, 2010) – The Hydrocephalus Association launched the Teens Take Charge initiative to engage teens in advocating for more research. The program will develop the next generation of activists fighting to find better […]

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When Life Hands you Hydrocephalus…

By Sarah Oxford, Regional Program Manager Nine year old Alex Rodger is one of the youngest entrepreneurs I know. His mom, Eileen, organizes the South Florida Walk which will take place on Saturday, November 6th. Last year Alex decided he personally wanted to raise funds for “Team Alex”. So he opened a lemonade stand and […]

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Research Update

The Hydrocephalus Association (HA) received nineteen letters of intent to apply for the second cycle of the Mentored Young Investigator Awards. Of these letters of intent, sixteen were accepted. In June, HA received fourteen final applications for the 2010 award cycle, including nine clinical projects, four bench science projects and one mathematical modeling project. This […]

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Hydrocephalus…It’s a Real Headache

By Tom Smith, Adult Services & Outreach Coordinator Recently, we posed this question on Facebook ‘What does hydrocephalus mean to you?’ We received scores of answers, all of them great, many of them poignant. One of them was: “Headaches – and I wonder when they might be a serious problem.” Headaches have a very special […]

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National Memory Screening Day

by Karima Roumila, HA Community Programs Director One of the symptoms of Normal Pressure Hydrocephalus (NPH) is memory difficulties. The Alzheimer’s Foundation of America (AFA) has initiated a National Memory Screening Day.  According to AFA, this event was first introduced in November of 2003 and since then it became a national event that occurs every […]

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WALK tip of the Month:

Five Reasons to Register Early for WALKS by Randi Corey, Hydrocephalus Association Director of Special Events You get your own WALK webpage: When you register online your own personal, WALK webpage is automatically generated. This includes a hyperlink (or URL) that you can email to family and friends asking them to sponsor you. Clicking on […]

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Concert to Benefit Hydrocephalus Research

By David Moore If you live in the Washington, D.C. area, take a stroll down memory lane while helping the future of hydrocephalus research, by attending Peter Yarrow’s Concert for Hydrocephalus. This family friendly event will take place on Sunday, October 24, 2010 at the Residence of the Australian Ambassador in Washington, D.C. Peter Yarrow, […]

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You’re Not Alone

By Jennifer Bechard Imagine how a 10 year old would feel lying in a hospital bed not knowing what is going on or where to turn to for support. With too many questions and not enough answers, a condition such as hydrocephalus can take an emotional and physical toll on any individual, especially a child. […]

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Hydrocephalus Association CEO on Her First WALK

by Laurene McKillop, PhD What better kind of day to walk than a bright, late summer day, crispy cool in the morning and warming up as the Walk proceeds?  “Crispy cool” lets you know that I wasn’t on the east coast:  this was the Detroit Walk, held on August 7th, 2010. I arrived early, along […]

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Gabriel’s Life Sticker Campaign

Our partner website Gabriel’sLife.com is launching an ambitious campaign to raise awareness of hydrocephalus. On September 23, ABC will air the season premier of their hospital drama “Grey’s Anatomy.” On the same day, Gabriel’s Life will launch a campaign to get a Gabriel’s Life sticker on the prime time television show. How you can help. […]

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Dr. Joseph Madsen Blogs on Translational Research

If you want to understand better how basic scientific research produces better clinical outcomes, be sure to read Dr. Madsen’s article, “A Very Narrow Bridge:  Translational Research.”  Dr. Madsen, a member of the Hydrocephalus Association Medical Advisory Board, directs a lab at the Children’s Hospital of Boston, where he treats children with hydrocephalus.  He spoke […]

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The Night Before Walk

by Randi Corey, HA Director of Special Events ‘Twas the night before Walk and all it entails Walk Chairs all over were pacing and biting their nails. Although the site was set up with care they wished – and wondered “Would the walkers be there?” “And will the weather be sunny and bright?” “Or, will […]

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The Hydrocephalus Association Provides Commentary to the Food and Drug Administration

On September 13, 2010, the Hydrocephalus Association had the opportunity to provide commentary at an Open Public Hearing sponsored by the Food and Drug Administration (FDA).  FDA currently funds a project called the “Ask Study,”  which aims to assess, from the perspective of a young person,  the effectiveness of various neurological medical devices they use […]

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Hydrocephalus Walk Tip of the Month

Letter writing campaigns for Walk Family Teams! by Randi Corey, Hydrocephalus Association Director of Special Events Family Teams currently comprise the majority of the Hydrocephalus Association (HA) Walks. A ‘Family Team’, is usually a team with a direct connection to hydrocephalus and HA’s mission which is to eliminate the challenges of hydrocephalus. The team forms around a […]

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Trust and Let Go

by Pip Marks The issue of transition is very close to my heart – it has been since the day my oldest child was born. My first questions to the docs after his birth were “Will he be able to live away from home one day? Will he be able to take care of himself? […]

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Announcing the 2010 Hydrocephalus Association Scholarship Awards

By Tom Smith The Hydrocephalus Association (HA) is both pleased and privileged to award eight scholarships to persons with hydrocephalus seeking higher education. Each year we receive dozens of application and as you might imagine, is is always difficult to choose among the many outstanding applicants. However, we are pleased to announce that these young […]

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Sharkfest by Sarah Oxford

“Make sure to stay calm, have fun and focus on your target,” advised a veteran Sharkfest swimmer as we approached Alcatraz, a historical landmark located in the legendary shark-infested San Francisco Bay. Over 800 swimmers anxiously stared out the ferry windows as water temperature (59°) and safety protocols were announced over a loud speaker. A […]

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