A recently published study analyzes hydrocephalus research funding from NIH over 10 years and concludes that more researchers are needed in the field as well as alternative funding sources if we are to move the hydrocephalus research agenda forward.
In her monthly blog, Hydrocephalus Association CEO Dawn Mancuso shares the results of our Stakeholder Survey eliciting input from our members on the state of HA and direction for the future of the association.
The Adult Hydrocephalus Clinical Research Network Planning Committee finalizes the policies and procedures for collecting data from adult hydrocephalus patients at its 6 clinical centers and reviews protocols for its first clinical study.
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!
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.
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.
Summary of the Hydrocephalus Clinical Research Network (HCRN) investigators and coordinators’ Fall meeting, November 7- 8, in Salt Lake City.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Hydrocephalus Association Teens Take Charge Advisory Council member, Madeleine Darowiche, challenges us to raise awareness through our local media this Hydrocephalus Awareness Month 2013.
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 […]
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.
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.
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.
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.
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!
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.
Our very own, Madeleine Darowiche, Teens Take Charge Advisory Council Member, has her letter calling for more hydrocephalus research published in the Sun Sentinel.
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.
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.
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.
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.
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.”
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.
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.
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.
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.
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 […]