2012

9/15 – Richmond, Virginia Hydrocephalus Support Group Meeting

~Partners Network ~ Hydrocephalus Support Group Meeting  Virginia TOPIC: Overview of 12th HA Conference When: Saturday, September 15, 2012  2:30pm to 4:00pm Where: Rappahannock Regional Library England Run branch 806 Lyons Blvd Fredericksburg, VA 22406 Please R.S.V.P. to Annie Mason by Wednesday March 21, 2012 (540) 898-4568 or Richmondsupport@hydroassoc.biz Find our group on Facebook under […]

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Raising Awareness…From Coast to Coast!

Strength. Perseverance. Endurance. Spirit. Do these traits sound familiar? Of course, these are all words that describe individuals touched by hydrocephalus. These words also describe Mark Paulissen and Mary Sodano. Their spirit of adventure and love for bicycling has spurred them onto a journey of a lifetime. Sponsored by Celsius drink company, Mark and Mary have challenged […]

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Voices from our Community: Madeleine Speaks Up About Hydrocephalus

By: Madeleine Daraowiche Hi, my name is Madeleine. I am 17 years old and will be a junior in high school. I have had hydrocephalus since before I was born. I was diagnosed in utero, and had my first shunt placed when I was 15 days old. Since then, I have had six shunt revisions. […]

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Tracy Taback has Article about Hydrocephalus Published in The Hartford Courant

Tracy Taback raises awareness about hydrocephalus, shares her personal journey, and announces the upcoming Middlebury, Connecticut WALK scheduled for October 6th. To read the full article, click here.

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Fiona Wilcox Makes it Back to School for the First Day of the Year

The Brink/The Oregonian reports on the heartwarming story of Fiona Wilcox who returns from a surgery in time for the first day as a freshman at Jefferson High School. To read the full article, click here.

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2500 Mile Bike Ride will Benefit the Hydrocephalus Association

Mark Paulissen and Mary Sodano  are preparing to embark on a 2500 mile bike ride journey ride for a cause near to their hearts, hydrocephalus. To read the full article, click here.

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Duke University Study on Stem Blood Cell Infusions to Benefit Infants with Congenital Hydrocphalus

Baby Tyler, born in Pittsburgh, PA, receives infusions comprised of stem cell blood from her umbilical cord and placenta as part of a study by Duke University blood and marrow transplant program. To read the full article, click here.

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Voices from Our Community: Milton Newman Shares His Story of Normal Pressure Hydrocephalus

Fog is Lifted After 15 Years of Confusion and Misdiagnosis Milt Newman’s retirement was not living up to expectations due to a slow progression of seemingly inexplicable mental and physical decline. What no one knew was that Milt, then 73, was suffering from Normal Pressure Hydrocephalus (NPH), a treatable neurological disorder in which excess fluid […]

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Back To School Time!

It’s that time of the year – back to school time! Most kids around the country will have returned to school this past Tuesday, September 4th, if they have not already. This can be an exciting yet stressful time for parents and kids alike. While kids may be worried about facing the academic rigors of […]

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Voices from Our Community: Abby Shares Her Life Experiences With Hydrocephalus!

By: Abby Wood Hi!  My name is Abby.  I turned 12 years old at the end of August and this is a snapshot of my life.  I was born in Albuquerque, New Mexico. When I was born, I was very sluggish and tired. My parents found out that I had hydrocephalus a few weeks later […]

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Delaware’s Hydrocephalus WALK Highlighted in the Smyrna-Clayton Sun-Times

The Smyrna-Clayton Sun-Times highlights the upcoming Delaware Hydrocephalus WALK which will take place on September 22, 2012 at Smyrna High School. To read the full article, click here.

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A Novel Micropatterned Microvalve Developed for the Treatment of Hydrocephalus

Researchers at Arizona State University in collaboration with Phoenix Children’s Hospital have developed a novel microvalve with a passive and simple design/implantation that may result in lower failure rates. To read the full article, click here.

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September is Hydrocephalus Awareness Month! Here’s What You Can Do…

by Jennifer Bechard, Support Group Liaison This September, for Hydrocephalus Awareness Month, the Hydrocephalus Association (HA) invites you to celebrate and honor the estimated one million Americans touched by hydrocephalus. As a community, we can do this by raising awareness about hydrocephalus either in our own circles or to the larger networks of which we […]

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CT News Channel WTNH Spotlights the Upcoming Middlebury WALK

Connecticut News Channel WTNH spotlights the upcoming Middlebury WALK that will take place on October 6, 2012 at Meadowview Park. To read the full article, click here.

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Famous Gospel Singer and Wife Create Their Family Through Adoption and Devotion

  The Adrian Daily Telegram shares the story of the national recognition Jerry Garcia and his wife Sarah have received by adopting children with medical conditions and special needs. To read the full article, click here.  

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Wall Street Journal Reports on 70 Year Old Indiana Man’s Misdiagnosis of NPH

The Wall Street Journal shares the story of 70-year-old Jasper “J.D.” Cain, misdiagnosed with Parkinson’s disease but  ultimately receives diagnosis of NPH. To read the full article, click here.

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The Unique Challenges of Adult Hydrocephalus

By Dawn Mancuso “The difference between children and adults is that they’re shorter – not dumber.” ― Mo Willems Normally, I would agree with Mr. Willems. We adults tend to underestimate the intelligence of the children around us, assuming that our life experiences make us somehow smarter.The Unique Challenges of Adult Hydrocephalus However, I’ve learned […]

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Chicago’s Upcoming WALK Appears in the Chicago Sun Times Online

Local reporter,  Matthew Schwerha, highlights the upcoming Chicago WALK occurring September 15, 2012. To read the full article, click here.

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Leslie Katz Shares Her Sister’s Story of Living with Hydrocephalus

Leslie Katz, , CRAVE Technology Writer, approaches an article on her sister’s journey with hydrocephalus from a technology point-of-view on CNET.com. To read the full article, click here.

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Motorcycle Club Raises Funds for Young Boy with Hydrocephalus

The Steel Talon motorcycle club raised funds for a NY boy and his family. To read the full article, click here.

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Hershey Park WALK Featured on Pennlive.com

The August 4th Hershey, PA WALK is featured on Pennlive.com. To read the full article, click here.

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Military Researchers Gain Understanding of TBI

Military researchers are getting a better understanding of the long-term neurological effects of a battlefield blast or concussion. To read the full article, click here.

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St. Louis WALK Appears in Local Newspaper

The STLtoday.com featured the upcoming 6th Annual St. Louis WALK occurring on September 23rd at Queeny Park. To read the full article, click here.

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Hydrocephalus Discovery Published in Penn State CIDD Journal

Dr. Steven Schiff of Penn State has had his findings published in the Center for Infectious Disease Dynamics (CIDD) journal. To read the full article, click here.

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HA Medical Advisory Board Member Receives Grant from NASA

By Karima Roumila, MPH Congratulations to Michael A. Williams, M.D., medical director of The Sandra and Malcolm Berman Brain & Spine Institute (BSI) at LifeBridge Health. Dr. Williams, who is a member of the Hydrocephalus Association’s Medical Advisory Board , and served as the co-chair of our 12th National Conference on Hydrocephalus, recently received a […]

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…times, they are a changin’

  By Dawn Mancuso “…Come senators, congressmen, please heed the call” -Bob Dylan July has been an incredibly busy month for the Hydrocephalus Association.  In fact, it is safe to say that the word busy hardly does it justice.  At the beginning of the month, we wrapped up our biennial conference on hydrocephalus in Bethesda, […]

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Welcome to our new office!

It was a bittersweet moment to close and lock the door of Suite 705 for the final time at 870 Market Street in San Francisco on July 31st. After 29 years of being headquartered on the west coast, the Hydrocephalus Association has moved our national headquarters to the Washington, D.C., area. Our new office location […]

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The 12th National Conference on Hydrocephalus

    The Hydrocephalus Association held it’s 12th National Conference on Hydrocephalus in Bethesda, MD from June 27th through July 1st, 2012. As always we gathered to re-establish our sense of community and educate ourselves about hydrocephalus. Conference Highlights: Advocacy Day On Thursday, June 28th, over 200 participants visited their congressional representatives to lobby for […]

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Congratulations to Our 2012 Scholarship Recipients!

We are pleased to announce the 2012 Hydrocephalus Association Scholarship Awards recipients. The scholarships program marks its 18th year and we are very proud to honor these amazing young adults. Despite the challenges and obstacles of having hydrocephalus, these future young leaders of our community are able to further their education, help their community and […]

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Welcome Aisha Heath, CFRE

The Hydrocephalus Association is pleased to announce Aisha Heath, CFRE  as the new Director of Development. Ms. Heath has devoted her professional career to raising awareness and resources for national organizations supporting the health and well-being of children and families. She has worked in the non-profit sector for over 12 years, fundraising for a variety […]

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Congress Discusses Hydrocephalus and our Military

by Paul Gross, HA Chairman of the Board of Directors Yesterday, hydrocephalus was a hot topic in Congress during the debate over the annual defense spending bill. Experts believe that two-thirds of our current and former military service members suffering from moderate to severe traumatic brain injuries are at risk of developing hydrocephalus – more […]

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Hydrocephalus Research Conference Highlights

By Paul Gross, Chairman of the HA Board of Directors The third NIH sponsored research conference on hydrocephalus concluded on July 11th  and by all accounts was a resounding success!  Entitled “Opportunities in Hydrocephalus Research: Pathways to Better Outcomes“, the conference featured a broad spectrum of thought leaders from bench scientists in molecular biology to […]

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Advocacy Day and the 12th National Conference

Famed football coach Vince Lombardi once said that “My teams have never lost a football game. They just occasionally run out of time to win it.” Here at Hydrocephalus Association, we know first-hand just how time is of the essence. Each day, more children and adults are diagnosed with hydrocephalus. And, those previously diagnosed with hydrocephalus […]

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Hydrocephalus Association Brings its Message to Capitol Hill!

On Thursday, the 28th of July, the second day of our conference, we held our second Advocacy Day on Capitol Hill, “Climbing Capitol Hill for a Cure.”  Hundreds of members of the hydrocephalus community braved the intense heat of a Washington, DC summer day to bring our message of increased funding for hydrocephalus research to […]

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“Reason for Hope” Campaign Receives Big Boost

On June 21st, the Hydrocephalus Association (HA) announced the launch of its new $3 million dollar fundraising campaign called “Reason for Hope.”  We are very pleased to announce that we have received a commitment for a gift of $500,000 to that campaign.  The anonymous donor requested that these funds be used in support of HA’s […]

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Historical Perspective of Hydrocephalus and its treatment & HA History: 1983 – 2012 – then, now and the future

Ever wanted to know more about the history of hydrocephalus? When was it discovered? How has it evolved over the last 2500 years? Would you like to know more about the work of Dr. Hakim? How about the humble beginnings the Hydrocephalus Association? Well, we invite you to attend the 12th National Conference in Bethesda, […]

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“Reason for Hope” – HA’s New Research Campaign

By Tom Smith We are pleased to announce our new $3 million dollar fundraising campaign called “Reason for Hope”. Its purpose is to fund a five year Research Initiative plan intended to push hydrocephalus research forward. The funds will be used to implement three areas deemed crucial to eventually finding a cure for hydrocephalus. Stimulate […]

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Only One Week Away!!! 12th National Conference on Hydrocephalus! What it’s all about!

Our biennial hydrocephalus conference is one of the traditional cornerstones of the Hydrocephalus Association’s commitment to meeting the far ranging needs of our community. This year, from June 27th through July 1st, the HA invites you to join us in Bethesda, MD at our the 12th National Conference on Hydrocephalus. Education, education, education… Hydrocephalus is […]

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Benjamin Warf, MD – To Speak at 12th National Conference on Hydrocephalus

We are honored and excited to announce that Benjamin Warf, MD is joining our faculty this June in Bethesda, MD.  Dr. Warf is scheduled to give the Keynote Address during lunch on Saturday June 30th.  His Inspirational Keynote Address will encompass his work treating hydrocephalus in Sub-Saharan Africa. Dr. Warf began his career in pediatric […]

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NetFlix Founder Headlines Hydrocephalus Research Conference

NetFlix Founder and former member of the Hydrocephalus Association Board of Directors Marc Randolph will be a keynote speaker at the upcoming research conference, “Opportunities in Hydrocephalus Research: Pathways to Better Outcomes,” scheduled for July 9 – 11, 2012, in Seattle, Washington. Mr. Randolph was the founding CEO of NetFlix, and served as a member […]

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