HA Updates

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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HA’s Technology Beat

At the Hydrocephalus Association, we’ve made it a special point to streamline our donation process to make it easier to give online. With the added responsibility of raising funds for research, we cannot afford to do any less for our community. We’ve upgraded to a new giving tool for our Walk program, streamlined workplace giving […]

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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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Walk Day Fever

By Sarah Oxford 5:30 am. It was pitch black. I rubbed my eyes and looked into a U-Haul truck filled with water bottles, tables, banners and everything imaginable that is needed to host a WALK event. Volunteers, organized by task, scurried to prepare for the event. “We LOVE WALK and Phyllis is SO organized!” said […]

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Pittsburgh and St. Louis children’s hospitals join HCRN

by Paul Gross Our partners at HCRN have just made a big announcement — that they are adding two new pediatric centers to their network. The network now includes Toronto’s SickKids, Pittsburgh’s Children’s Hospital of Pittsburgh, Birmingham’s Children’s Hospital of Alabama, Houston’s Texas Children’s Hospital, St. Louis is Children’s Hospital, Utah’s primary Children’s Hospital and […]

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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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Hydrocephalus Association Walk Chairs are Extraordinary

by Randi Corey We’re approaching the fall of 2010 (where did the summer go?) – when the majority of HA WALKs are held.  Between September 1st and November 7th 16 of HA’s 24 annual WALKs are scheduled!  This is my first “walk season” with HA and I’m really looking forward to attending some Walks and […]

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An Evening on the Cape

by David Moore On a Saturday evening in Cape Cod, there are a myriad of activities one can do to entertain themselves. So why would anyone want to spend that evening learning about Hydrocephalus? Yet, that is exactly what 35 people did on the evening of July 31— joining Barrett O’Connor and her husband Paul […]

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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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When I Grow Up

By Michelle Emick Ronholm We all have childhood dreams and aspirations.  What kid hasn’t pretended to be ballet dancer, a gymnast, a doctor, a firefighter or a professional baseball player?  Sometimes those dreams become reality; often we evolve those dreams into fulfilling and happy lives.  What most kids don’t think about as they’re growing up […]

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It Really Is Brain Surgery

By Michelle Emick Ronholm There were so many fantastic sessions and activities during the 11th National Conference on Hydrocephalus.  But one of the most impactful components of the conference was the opportunity to watch live surgeries to treat hydrocephalus. The conference launched with a tutorial on the brain, how it functions, how hydrocephalus impacts it […]

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Inspiration All Around

By Laurene McKillop, PhD Bright, warm sunshine greeted participants in the 11th  National Conference on Hydrocephalus, as they walked for the cause on Sunday morning, June 20.  It was a glorious end to a thrilling event.  Where else can one have gone to see two brain surgeries performed live in two days?  Over the coming […]

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Snapshots from the 11th Hydrocephalus Conference

Here are a few photos taken at the 11th Hydrocephalus Conference held over the weekend in Cleveland. Stay tuned…we’ll be posting great information from the conference in the coming days.”

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From the 5th International Hydrocephalus Workshop!

Our friends over at HCRN have been busy with some exciting work that we wanted to make sure our readers also know about. John Kestle writes about the 5th International Hydrocephalus Workshop and meeting of the International Society for Hydrocephalus and CSF Disorders. Check it out!

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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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Kudos to Rhode Island WALK

Rhode Island WALK 2010 has definitely taken strides.  Held on May 2nd at Haines Memorial State Park in Barrington, RI, they had well over 125 participants and have raised over $10,000, with more coming in.  This will go towards fulfilling the Hydrocephalus Association’s mission of Awareness, Education, Support and Research for a cure. We would […]

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Spring in our Step

Spring has dawned upon a bi-coastal Hydrocephalus Association and I’m thrilled with all that we have going on across the country. We have added several key staff to our roster and now the search has begun in earnest to find our new offices. It’s an exciting period of growth for us. Spring also heralds WALK […]

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Conference Early Bird Rates Extended!

11th National Conference on Hydrocephalus in Cleveland, OH June 17, 2010–June 20, 2010 Lucky you! We are giving you one more chance to get our early bird registration discount.  Take a peek at our fabulous program – you will see the conference will be full of rich opportunities to learn from and connect with our […]

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Exciting news on the HA research front!

In response to our announcement of a second round of grants for Mentored young Investigators, we have received a record number of Letters of Intent.   So far, we have learned of nearly three dozen interested young investigators in just two years!   Letters this cycle have been received from some of the most prestigious academic  medical centers […]

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Success! The Rhode Island WALK…

Success!  The Rhode Island WALK had over 125 participants and raised over $8,000.  Read the following article about RI Walk chair, Linda Davis! Thanks for all you do!!!

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HA Now Accepting Applications for New MYI Awards

Please note that this deadline has officially passed. The purpose of this Request for Applications (RFA) issued by the Hydrocephalus Association is to support young scientists and clinicians to build careers in hydrocephalus research.  Potential applicants must submit a letter of intent by April 30, 2010 describing the nature of the proposed project and its […]

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