hydrocephalus research

Countdown to Conference: How Conference Changed One Teen’s Life…

The Hydrocephalus Association 13th National Conference on Hydrocephalus will be July 9-11, 2014, in Portland, OR. Madeliene Darowiche from our Teens Take Charge Advisory Council shares why it’s a MUST ATTEND EVENT for members of the hydrocephalus community. We hope to see you there!

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CALL TO ACTION: PCORI Seeking Members for Advisory Panels

The Patient-Centered Outcomes Research Institute (PCORI) has announced openings on four Advisory Panels: Clinical Trails, Rare Disease, Assessment of Prevention, Diagnosis, and Treatment Options, and Improving Healthcare Systems.

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HCRN at the Pediatric Section Meeting

Summary of the presentations by HCRN investigators at the recent AANS/CNS Section on Pediatric Neurological Surgery held in Toronto, December 3-6, 2013.

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Looking Back…Moving Forward: A Most Precious Gift

As the Hydrocephalus Association wraps up its interview series commemorating our 30th anniversary, we sit down with Russell Fudge, a founding member of the association and its longest serving board member. Russell closes our interview series looking back at our rich history and giving the association a message for the future.

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Research UPDATE: HCRN Semi-Annual Investigator Meeting Summary

Summary of the Hydrocephalus Clinical Research Network (HCRN) investigators and coordinators’ Fall meeting, November 7- 8, in Salt Lake City.

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Portland: Here We Come! 2014 Hydrocephalus Conference

SAVE THE DATE: The 13th National Conference on Hydrocephalus will take place in Portland, Oregon, on July 9-11, 2014! Our patient-centered conferences empower all of us to understand, seek out and put into place the care, programs and services that will meet our needs now and well into the future.

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Seattle Seahawks Owner Donates $2.4 Million to Study Traumatic Brain Injury

Seattle Seahawks owner and Microsoft co-founder Paul Allen has funded $2.4 million to study the long-term effects of traumatic brain injury, such as blow(s) to the head, on individuals. Dr. Richard Ellenbogen, a member of the Hydrocephalus Association Medical Advisory Board, will serve as one of the principal investigators.

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HA Joins #GivingTuesday THIS December 3, 2013

The Hydrocephalus Association (HA) is proud to be a partner in the second annual #GivingTuesday global movement. HA will raise awareness and funding to cure hydrocephalus, a neurological condition that affects 1 million individuals. All funds raised through #GivingTuesday will support our Reason for Hope Research Campaign.

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Hydrocephalus Getting the Attention It Deserves

For all of the health and financial burdens hydrocephalus places on individuals and society, far too little is being invested in research, especially when compared to diseases with similar burdens like cystic fibrosis and Parkinson’s disease. That’s why, in 2009, the Hydrocephalus Association expanded our mission to include funding hydrocephalus research. We launched a Research Initiative to stimulate the research ecosystem, improve outcomes and quality of life, and study the root causes of the disease, with an ultimate mission of finding a prevention or cure.

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Looking Back…Moving Forward: Building Bridges Between Pediatric and Adult Hydrocephalus

As the Hydrocephalus Association continues our 30th year anniversary commemoration, Dr. Marion “Jack” Walker, pediatric neurosurgeon, Primary Children’s Medical Center, Salt Lake City, Utah, reflects on his 37 years of service to the hydrocephalus community.

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Are we looking for innovation or revolution?

In her monthly blog, Hydrocephalus Association CEO Dawn Mancuso explores how a simple paradigm shift in thinking presented at a recent conference at Children’s Hospital of Alabama, might cause a revolutionary change in the rate of progress for research around hydrocephalus.

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Looking Back…Moving Forward: Advancing the Research Mission

As the Hydrocephalus Association continues it’s 30th anniversary commemoration, David Browdy, Board Member and Chair of the Research Committee, reminisces about the history of the association and shares a vision for the future.

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Seattle Entrepreneur Receives Inspiration Award for Relentless Commitment to Curing Brain Condition

Paul Gross received the Vision Award for Inspiration by the Hydrocephalus Association for his work to stimulate research to find a cure for hydrocephalus, a condition that affects 1 million Americans.

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Study Seeking Participants on the Clinical, Anatomic and Genetic features of Pediatric Hydrocephalus

Researchers at Seattle Children’s Hospital seek to enroll participants in a study on the clinical, anatomic and genetic features of hydrocephalus.

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NIH Approves High Priority Research Within BRAIN Initiative

Hydrocephalus Association Research Programs Manager, Ashly Westrick, provides an update on the NIH BRAIN Working Group, who presented their preliminary report identifying research priorities to the Advisory Committee to the Director.

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Looking Back…Moving Forward: Leading the Charge to WALK to End Hydrocephalus

What started as a walk across the Bay Bridge has grown into the Hydrocephalus Association (HA) WALK program, hosting 32 WALKS across the country to raise awareness for hydrocephalus. This week we interview Randi Corey, Director of Special Events, who shares her vision for the future of the association.

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MX for Children Announces Helmets for Hydro!

MX for Children will be holding their 4th auction benefiting hydrocephalus research on September 24th. The group organizes fundraising events and unique experiences around the sport of Motocross and Supercross. The activities benefit research at children’s hospitals around North America.

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The Pen is Mightier Than the Sword

Hydrocephalus Association Teens Take Charge Advisory Council member, Madeleine Darowiche, challenges us to raise awareness through our local media this Hydrocephalus Awareness Month 2013.

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Research UPDATE: Exploring Alternative Treatments

In our third installment of the Mentored Young Investigator (MYI) blog series, we showcase 2009 MYI recipient, Joon Shim, Ph.D.  At the time of the award, Dr. Shim was a postdoctoral fellow at Boston Children’s Hospital. He is now a Research Assistant Professor at Indiana University.  He received an MYI grant for his study, “The […]

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Looking Back…Moving Forward: With Laughter In His Heart

The Hydrocephalus Association continues it’s 30th anniversary interview series with Sam Marks, life-long HA member, as he shares his unique experience growing up with the Hydrocephalus Association and his advice for confronting life’s challenges.

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HA WALK Chair Featured in The Charlotte Observer

Summer Minchew, Hydrocephalus Association Charlotte, NC WALK Chair and support group leader, shares her moving personal experience of her son’s diagnosis and treatment for hydrocephalus, and proudly announces the inaugural WALK for Charlotte in The Charlotte Observer’s MomsCharlotte.com.

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30 is the Magic Number THIS Hydrocephalus Awareness Month!

This September, the Hydrocephalus Association (HA) invites you to celebrate and honor the many faces of hydrocephalus, and to unite with us to create one strong voice of awareness during Hydrocephalus Awareness Month. Let’s challenge ourselves to find new ways to get involved in raising awareness through education and advocacy activities.

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Announcing Our 2013 Research Grant Recipient

The Hydrocephalus Association (HA) has selected Timothy Vogel, M.D., from Cincinnati Children’s Hospital Medical Center, to receive funding for an additional research grant in HA’s 2013 grant cycle, for his work in basic science that improve our understanding of the root causes of hydrocephalus.

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NEW Hydrocephalus Educational Webinar Launch

The Hydrocephalus Association is pleased to announce our 2013 Education and Support webinar series! In this first webinar, Dr. Michael Williams, Medical Director of the Sandra and Malcolm Berman Brain and Spine Institute at Sinai Hospital of Baltimore, will discuss how the diagnosis of normal pressure hydrocephalus can be missed, and how it can be made. Register today!

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Looking Back…Moving Forward: A Journey of Support

Debby Buffa has raised two daughters with hydrocephalus and provided support to hundreds of families since the early 1980s. As the Hydrocephalus Association (HA) continues its 30th anniversary interview series, Debby shares her journey with HA over the last 30 years.

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Teen has Letter to the Editor Published in the Sun Sentinel

Our very own, Madeleine Darowiche, Teens Take Charge Advisory Council Member, has her letter calling for more hydrocephalus research published in the Sun Sentinel.

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Looking Back…Moving Forward: Celebrating 10 Years as a WALK Chair

As we continue our interview series in commemoration of the Hydrocephalus Association’s 30th anniversary, we sit down with Phyllis Rogers, who is in her 10th year chairing the Denver WALK, as she reflects on her drive to continue to chair the WALK and her hopes for the future of the Hydrocephalus Association.

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A New Meaning for the Word Freedom

Hydrocephalus Association CEO Dawn Mancuso talks about a new kind of freedom this 4th holiday in her monthly blog.

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HCRN Adds Centers in Vancouver and Tennessee

With recent moves of Hydrocephalus Clinical Research Network (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.

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NIH Invitation to Public Meetings on the BRAIN Initiative

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. The Hydrocephalus Association encourages members of the hydrocephalus community to participate and ensure that our community is represented.

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Research UPDATE: MYI Publishes Article in Journal of Experimental Neurology

Joon Shim Ph.D., a recipient of the Hydrocephalus Association’s Mentored Young Investigator (MYI) award in 2009, has published an article in the journal Experimental Neurology that identifies a potentially useful biomarker for hydrocephalus.

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Dr. Podvin Responds to a Question About Her Research

Dr. Sonia Podvin takes the time to answer a question from a recent blog about her work entitled, “Research UPDATE: Investigating Alternative Treatment Options for Hydrocephalus.”

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Research UPDATE: 2013 Research Award with RSRI in Full Swing

The Hydrocephalus Association 2013 Research Award in Cerebrospinal Fluid Production, Flow and Regulation Therapeutics and Diagnostics in partnership with the Rudi Schulte Research Institute (RSRI) is in full swing.

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A Special Message: The Power of Our Voice

Hydrocephalus Association founders, Emily Fudge and Cynthia Solomon, deliver a special message about the power in our collective voice, and how we are more hopeful than ever that with continued persistence there will be a medical breakthrough for the hydrocephalus community.

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Research UPDATE: Investigating Alternative Treatment Options for Hydrocephalus

The Hydrocephalus Association (HA) Research Department update focuses on the research of Dr. Sonia Podvin who aims to develop safe, specific drugs to treat hydrocephalus. She is the recipient of a Mentored Young Investigator (MYI) award from HA.

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HCRN Investigators Venture to Africa to Learn New ETV/CPC Procedure

Hydrocephalus Clinical Research Network (HCRN) investigators Drs Jay Riva-Cambrin and Curtis Rozelle are in Africa learning how to do Dr. Ben Warf’s new ETV procedure that includes choroid plexus cauterization (CPC). This is an exciting step in training prior to studying the treatment in the network.

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A Gift of Advocacy: Support Your Voice in Washington

The Hydrocephalus Association’s advocacy strategy spans a broad range of activities from local, grassroots awareness efforts such as our WALK program, to state level efforts to establish hydrocephalus awareness days/months, to our federal efforts which focus on research programs at the National Institutes of Health (NIH) and legislation with Congress. Our primary advocacy goal is […]

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A Gift of Legacy: Join the Fudge Solomon Legacy Society

The Legacy Society provides an opportunity for supporters to ensure the organization’s research, support, advocacy and education work continues by placing a “future” gift to the Hydrocephalus Association in their wills, trusts or estate plans. As a member, you will demonstrate your commitment to HA’s mission to eliminate the challenges of hydrocephalus and help to […]

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Delivering on a Promise

Update on the current research initiatives of the Hydrocephalus Association, focusing on a presentation by Paul Gross, Board Chairman, at the Trans-NIH Hydrocephalus Meeting in October. The meeting included representatives from four different Institutes within the NIH – the NINDS, the National Institute of Child Health and Human Development (NICHD), the National Heart, Lung & Blood Institute, and the National Institute of Biomedical Imaging and Bioengineering (NIBIB).

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HCRN Lead Investigator Conferred MSPH Degree by the University of Alabama, Birmingham

Hydrocephalus Clinic Research Network, Lead Investigator, Professor Jay Wellons, has been awarded his MSPH Degree by the University of Alabama, Birmingham.

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