Virtual Lab in Development to Find a Cure for Hydrocephalus

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Scientists are focusing in on promising research aimed at finding a cure for hydrocephalus

New York, NY | September 18, 2015

Scientists are focusing in on promising research aimed at finding a cure for hydrocephalus; and a new initiative funded by the Hydrocephalus Association, the largest private funder of hydrocephalus research in the United States, is uniting these researchers to accelerate their progress.

Hydrocephalus, which affects more than 1 million Americans of all ages, is caused by an abnormal accumulation of cerebrospinal fluid in the brain. The only treatment requires brain surgery, and repeated surgeries are often needed due to high failure rates of the predominant treatment—the insertion of a medical device called a shunt into the brain. Left untreated, it’s life-threatening.

This October, the Hydrocephalus Association will use its annual Vision Dinner as a major fundraising drive to provide $500,000 to support HA’s Network for Discovery Science (HANDS) which will centralize and solidify the field of research by bringing together the brightest minds into a single virtual lab.  The Association is also providing access to grants to kick-start and test potential research leads. HANDS, which will launch in the fall of 2015, will accelerate the development and implementation of innovative, cure-focused ideas, providing researchers with access to the tools, specimens and the expertise of scientists and clinicians around the globe.

HANDS will support and promote basic scientific efforts to understand the causes, consequences and complications of hydrocephalus as well as to identify mechanisms that lead to its prevention or cure.  Benefitting from shared infrastructure from top institutions around the country, forward-thinking researchers will be able to test their hypotheses at an accelerated pace. In its current state, the field of hydrocephalus research is small and scattered. Ideas with potentially field-altering implications are being left on the table because researchers do not have the necessary tools to perform studies, and collaborations are slow to form.

HANDS will also provide seed grants to researchers who have promising theories in developing a cure for hydrocephalus. These seed grants enable scientists to obtain the preliminary data needed to be competitive for the larger NIH grants—which are highly selective. Hydrocephalus is as common as Down syndrome, but receives only 1/30th the public research funding. Similarly, both hydrocephalus and Parkinson’s afflicts a comparable number of Americans, yet Parkinson’s receives $135 million in funding, and hydrocephalus receives $6 million, according to the NIH.

Olivia Maccoux, a 19 year old woman who has undergone over 120 brain surgeries due to hydrocephalus, is an extreme but not rare example of the results of the condition. Research, such as the work done by Dr. Jerold Chun, MD, PhD, whose landmark discovery of a significant factor in the development of hydrocephalus in newborns, could lead to a medical treatment that would have prevented Olivia’s hydrocephalus and resulting surgeries.

Dr. Chun will be the keynote speaker at the 2015 Vision Dinner in New York, with the theme, A Time for Awareness | The Hope of a Cure. The event gathers families, researchers, philanthropists, business leaders and advocates to learn about promising research and to provide the opportunity to celebrate community members helping to make a difference. The evening is underwritten by Craig and Vicki Brown, generous benefactors who have a son with hydrocephalus, to ensure every dollar donated is allocated to advance hydrocephalus research.

“Treatment is not a cure. We must accelerate the development and implementation of innovative, cure-focused ideas,” said Craig Brown, Senior Vice Chair, Hydrocephalus Association Board of Directors, “It is a healthcare crisis—current treatment is woefully inadequate and the cost of treating hydrocephalus exceeds over 2 billion dollars per year in hospital charges alone.”

More About Hydrocephalus

Hydrocephalus is a chronic, life-threatening condition that can only be treated surgically. The predominant treatment is the insertion of a small tube, called a shunt, into the brain to drain excess cerebrospinal fluid.  Shunts save lives but frequently malfunction, become infected or blocked.  It is not uncommon for a person with hydrocephalus to have ten or more shunt-related brain surgeries during the course of their lifetime and some individuals have more than 100 surgical procedures.  Each surgical procedure brings the risk of unknown long term cognitive and health effects.

The Hydrocephalus Association, the largest advocacy group dedicated to hydrocephalus, is fighting on all fronts to improve the quality of life for people living with the condition. The Vision Dinner is meant to encourage more research, increase public awareness, inspire physicians to specialize in hydrocephalus, and to continue to guide and support people living with the condition.

About the Hydrocephalus Association

Founded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association is the nation’s largest and most widely respected organization dedicated to hydrocephalus. More than 60 percent of HA’s funding comes from individual donations, and approximately 35 percent comes from foundation and corporate grants. The Hydrocephalus Association’s mission is to promote a cure for hydrocephalus and improve the lives of those affected by the condition. For more information, visit the Hydrocephalus Association website at www.hydroassoc.org or call (888) 598-3789.

9 Comments for : Virtual Lab in Development to Find a Cure for Hydrocephalus
    • Amanda Allen
    • December 16, 2018
    Reply

    Hi Everyone. My name is Amsnda and I have had hydrocephalus since birth. I just turned 30 in September 2018 and I estimate that I hVe had over 20 shunt surgeries in those 30 years. My last one was 7/1/10 just 9 days after I lost my Papa..the only man I consider to be my dad.

    • Joe
    • July 28, 2018
    Reply

    Hi everyone. My name’s Joe. I’ve had hydrocephalitis since I was about 5. I’m now 54. I’ve had 8 shunt revisions since 1990. I have that physically awkward feeling, awful headaches, vision problems, etc. Basically hydrocephalitis sucks! I’ve actually thrown up from pain many times. People look at me and think I’m just fine, but as I’m sure you people know, when that pain and sickness comes, I have to go lay down. I have seen others less fortunate than myself, so I count my blessings. I pray they find a cure for this. One thing very tough about this as well; I can’t afford the medical bills. GOD bless you all and never lose your hope for your future.

    • Khan
    • March 29, 2018
    Reply

    I discovered this article today and would like to know how far the experts have come. It’s about my son.

    • Jamie Auld
    • March 14, 2018
    Reply

    I am a 35yr old woman who was diagnosed with hydrocephalus at 2 weeks old. Fist surgery at 2 weeks, 2 months, 2 yrs old.. nothing til I was 18 then between 18 and 22 I had 6 revisions. I have not had any issues since then. I am blessed to be on no meds and am able to lead a fairly normal life. I know others aren’t so fortunate. I hope they find a cure for this soon!

  1. Reply

    I am a 43 year old male who has had 11 shunt revisions, 3 grand mal seizures as well as other seizures throughout my lifetime. However, my last shunt revision was 25 years ago and I have not had any problems since. My life prior to the last operation included revisions every 5 years. As a baby, I had most of the revisions.
    Anyway, I wanted to point out that my last revision was 25 years ago, no problems since, and no medications.

  2. Reply

    I am almost 29 years old and have had hydrocephalus since birth. In the first 30 days of my life when I weighed less then two pounds, I had to have two different shunts put in because the first one didn’t take and was too big for my head. Since then, I have had at least three other revisions, the latest one being on July 1, 2010, just nine days after I lost my Maternal Grandfather/Father figure to stomach cancer. From my own standpoint, I WISH AND HOPE every day that there is a cure for this disorder because I HATE having to undergo surgery every so often to fix this problem. I also HATE the accompanying headaches that I get when the shunt is not at the correct setting as I recently had to have my shunt adjusted because it was too high, causing me to be EXTREMELY dizzy when laying down sleeping. Not to mention being scared to walk and move for fear of falling as I walk. Now I ask you, what kind of a life is that? I always wanted to play soccer as a child, but because of this, I was never allowed to. I was only allowed to practice Tae Kwon Do (for which I am one belt away from Black) after showing my old Neurosurgeon the helmet that I was wearing when sparring. I TRULY hope that this virtual lab finds a cure QUICKLY for all forms of the disorder.

    • mersadez
    • September 24, 2016
    Reply

    typo at the end (im now 25)

    • mersadez
    • September 24, 2016
    Reply

    I say NO! to shunts my cousin
    had a shunt and she never stop having problems I myself have hydrocephalus and I had an incision made in my brain so that the fluid would drain on its own and i iI haven’t had any complications or had to have another surgery since I was 15 years old and under 25

    • Assis Filho
    • July 5, 2016
    Reply

    I’m here to present myself, I’m a 31 years old healthy man, going to gyms since my 14, soccer player, jumping with parachutes, very active life, was healthy actually, in November 2015, I was diagnosed with Hydrocephalus and there was no way out then perform the shunt-related brain surgery. My life changed dramatically, I’m getting my self-esteem back on track, but one of my wishes is to get rid of this shunt, and get back to my regular, active and happy life, I’m suffering with bad abs pain, headaches, and i will never, EVER, complain about my life, God usually gives what we can handle it. But it would be simply unbelievably awesome if something could be done, not just for me but for all those ones that are going to the same problems as I.

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