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How One Family Is Bringing Attention To Hydrocephalus

It is hard enough to support a seriously ill child through a devastating and poorly understood illness. But it is quite another thing to start an organization devoted to raising money to publicize the disease and raise money for research.

That, however, is just what the Finlayson family did when their daughter Kate was fighting for her life from hydrocephalus, which is an abnormal buildup of cerebrospinal fluid in the brain that can cause coma and sometimes death. In 2008, two years before Kate died, they founded Team Hydro, which, among other activities, sponsors two annual summer swimming events.

What makes families like the Finlaysons start such organizations? And what keeps…

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 How One Family Is Bringing Attention To Hydrocephalus

It is hard enough to support a seriously ill child through a devastating and poorly understood illness. But it is quite another thing to start an organization devoted to raising money to publicize the disease and raise money for research.

Hydro Kids

Home for kids with hydrocephalus.

Brave with Hydrocephalus

A blog to the world who might see a fraction of the joys and challenges of raising a miracle baby! Carter was born with Congenital Hydrocephalus & Macrocephaly in November 2007. He was also diagnosed with Cortical Vision Impairment and Hearing Impairment. Doctors said there was little hope for a full life...well we'd like to show the world what a full life looks like! We have triumphed over many obstacles, yet have many more to face. This is our story.

CURE Neuro

CURE Hydrocephalus is a division of CURE International committed to saving lives by eliminating untreated hydrocephalus and its preventable causes through training, treatment, and research.

Fetal Hydrocephalus

This site is dedicated to helping parents and families of children with congenital hydrocephalus. In addition to the usual medical definitions of what hydrocephalus is, we focus on how to take care of these children at home.

Hydrocephalus and Shunts U.K

This group is to explain a little about the condition i suffer with called hydrocephalus for which i had to have a Shunt inserted.

Hydrocephalus Association

Today, no cure for hydrocephalus exists, and the primary treatment – the insertion of a shunt into the brain – was developed fifty years ago and suffers from one of the highest failure rates of any surgical treatment. By focusing attention and research monies, HA works toward the ultimate end: a final cure to hydrocephalus.

Hydrocephalus Awareness

This group was made for the purpose of buying hydrocephalus merchandise for the Australian public.

Hydrocephalus Clinical Research Network

The mission of the Hydrocephalus Clinical Research Network is to dramatically improve the lives of kids suffering from hydrocephalus by conducting important and field-changing, multi-center clinical research.

Hydrocephalus Kids

The mission of the Pediatric Hydrocephalus Foundation is to educate the community by raising the level of awareness about this brain condition. The PHF will also provide support to the families, friends and children who are diagnosed with Hydrocephalus.

Hydrocephalus Support Association

We are a group of people who have hydrocephalus together with their friends and families. We also have the support of a number of specialists and our patrons are neurosurgeons...

International Federation for Spina Bifida and Hydrocephalus

The mission of the International Federation for Spina Bifida and Hydrocephalus is: ◦to reduce the incidence of spina bifida and hydrocephalus by primary prevention ◦ and to improve the quality of life of people with SBH and their families through human rights education, political advocacy, research and community building.

Life NPH

It’s often difficult to tell the difference because the symptoms of NPH are in many ways similar to those of Alzheimer’s or Parkinson’s. However, the feeling of feet glued to the floor, or difficulty walking is the first symptom to appear in NPH. And it’s different from, for example, Parkinson’s tremors. In Alzheimer’s, memory loss and confusion tend to be early symptoms, whereas in NPH these appear later. Fortunately, once NPH is confirmed, chances are it can be treated.

Living with Hydrocephalus

I've been living with hydrocephalus all my life. My hope is to bring awareness to other people about this disease.

Lucy's Journey with Hydrocephalus (among other things...)

We blog about the topics that currently affect our everyday lives - crazy schedules, travel, wrestling, premature babies, TEF and hydrocephalus.

National Hydrocephalus Foundation

Your resource for hydrocephalus information.

Society for Reserach into Hydrocephalus and Spina Bifida

This is a welcoming society with fantastic science. Among the pathophysiology and treatment of hydrocephalus and spina bifida, this is the only society I know that covers a breadth of neural tube defects.

Team Hydro

Team Hydro is a group dedicated to raising awareness about and finding a cure for the life-threatening medical condition known as hydrocephalus.

The Adventures Of Hydro Girl

The Adventures Of Hydro Girl!! All money made from this comic will go towards helping those and the families affected by hydrocephalus. All material is completely fictional and not intended to offend those with hydrocephalus. Hydro Girl, a teenage girl with a life threatening medical condition that somehow gave her superpowers. Now it is up to her and her friends to save the Brain Drain Universe from the villainous characters that will appear through-out the series.

The Turtle Mom

The story of our miracle girl, Parker Elizabeth and a little thing called Hydrocephalus…

Children’s Hydrocephalus Support Group

The Children’s Hydrocephalus Support Group was created to provide an opportunity for parents of children with hydrocephalus to share and learn from one another in an atmosphere confidentiality and support and to become better advocates for our children through education about hydrocephalus, treatments and therapies.

Microbot Medical

Based on the ViRob™ technology, the Microbot SCS™ device is a robotic system designed to prevent occlusions in the proximal cerebrospinal fluid shunt system.

National Institute of Neurological Disorders and Stroke

Hydrocephalus may be congenital or acquired. Congenital hydrocephalus is present at birth and may be caused by either events or influences that occur during fetal development, or genetic abnormalities. Acquired hydrocephalus develops at the time of birth or at some point afterward. This type of hydrocephalus can affect individuals of all ages and may be caused by injury or disease.

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