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When our son Jeremy was born in 2001, we felt very alone. We had never heard of Hydrocephalus before, and suddenly, this was something that we, and Jeremy would have to deal with for the rest of his life. We searched the internet, and purchased books to gather the most information and get the most knowledge on this incurable, but treatable condition.

We decided, after we were out of the woods, to start a local support group for families who have to deal with Hydrocephalus and other neurological conditions. We had our first picnic in April 2004; and have had picnics two or three times a year at our house to get together and we also hold an annual event in Largo Central Park to raise funds. We just have one goal, and that is for no person to have to go through what we did and feel like they are alone. Jeremy is now an adult and he is doing awesome! We have been very lucky as he has only had to endure four brain surgeries for his shunt. Jeremy does also have mild hemiplegic Cerebral Palsy and in 2010 started having seizures that resulted in a diagnosis of Epilepsy. Jeremy is now in an Extended Transition internship with Project Search.

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14th Annual HUGS Family Fun Day 2018 Video Highlights

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14th Annual HUGS Family Fun Day 2018 Video Highlights

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14th Annual HUGS Family Fun Day 2018 - Drone Footage

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Click the Link Below to Go To Our Resource Page

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Click the Link Below to Go To Our Resource Page

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Click the Link Below to Join Our Mailing List

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Click the Link Below to Join Our Mailing List

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http://eepurl.com/c1T9cf

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Click the Link Below to View Photos from all our Events

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Click the Link Below to View Photos from all our Events

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www.facebook.com/hugsflorida/photos/

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HUGS of Florida, Inc., Largo, Florida. 843 likes · 15 were here. We are a 501(c)(3) located in Largo, Florida. We have people of all ages in our group who are suffering from neurological conditions.

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Fox 13 Whats Right With Tampa Bay Segment

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Fox 13 Whats Right With Tampa Bay Segment

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Fox 13 Whats Right With Tampa Bay Segment

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In April 2017, Jeremy presented the idea of having a mascot for our local support group. Jeremy has Sensory Processing Disorder and wanted the mascot to be a strategy to try to overcome some of the challenges with SPD.

Huggles was born.

If you would like to request Huggles for an appearance, send an email to info@hugsflorida.org

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Fox 13 Story About Hydrocephalus Walk 2010

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Fox 13 Story About Hydrocephalus Walk 2010

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Fox 13 Story About Hydrocephalus Walk 2010

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April 2009

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Several families gathered April 19 in Largo Central Park for a picnic to celebrate five years of building a local support group for families dealing with Hydrocephalus.

Five years ago, Paula Keyser and her husband, Mark held their first picnic at their home in hopes of finding other families with the same situation as theirs. Their son, Jeremy, who will turn 8 years old in July, was born with this condition due to an intraventricular hemorrhage prior to birth.

"We are so thankful that we have found other people who are dealing with Hydrocephalus and its treatment. It's nice to feel like we are not alone," said Paula Keyser, in a press release.

Also at the picnic, were several seniors who are dealing with Normal Pressure Hydrocephalus, which commonly gets misdiagnosed as Alzheimer's. The support group assists individuals of all ages.

The local support group has raised $50,000 for the Hydrocephalus Association by holding a Walk event in Largo Central Park. The proceeds go to assist the Association based in San Francisco, a nonprofit organization that supports, educates and advocates for people with this condition. This year, the walk will be held on Saturday, Nov. 7.

Hydrocephalus, more commonly known as "water on the brain" is an abnormal accumulation of cerebrospinal fluid within cavities called ventricles inside the brain.

The fluid is produced in the ventricles, circulates through the ventricular system, and is absorbed into the bloodstream. The fluid is in constant circulation and has many important functions. It surrounds the brain and spinal cord and acts as a protective cushion against injury.

Hydrocephalus occurs when there is an imbalance between the amount of cerebrospinal fluid that is produced and the rate at which it is absorbed. As the fluid builds up, it causes the ventricles to enlarge and the pressure inside the head to increase. Hydrocephalus that is present at birth is thought to be caused by a complex interaction of environmental and perhaps genetic factors.

For more information about Hydrocephalus or this support group, please contact Paula Keyser at 415-7339 or e-mail her at hydrosupport@gmail.com.

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Several families gathered April 19 in Largo Central Park for a picnic to celebrate five years of building a local support group for families dealing with Hydrocephalus. Five years ago, Paula Keyser and her husband, Mark held their first picnic at their home in hopes of finding other families with the same situation as theirs.

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September 2007

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It's a disease that affects more than 375,000 million Americans. There is no cure or no prescription drug treatment.

Hydrocephalus is an accumulation of too much spinal fluid on the brain, according to National Institutes of Health. Water actually helps cushion the brain, but too much causes harmful pressure.

There are two kinds of hydrocephalus. In congenital hydrocephalus, the causes can be genetic or associated with the way fetal development takes place.

The main sign of congenital hydrocephalus is an enlarged brain.

Acquired hydrocephalus comes on at any age and its causes include head injuries, strokes, infections, bleeding in the brain and tumors and bleeding in the brain.

Symptoms include headaches, cognitive problems, balance and bladder control problems, vomiting and blurry vision.

To make the general public more aware of this disease more than 100 people got together for a walk-a-thon to raise awareness at Largo Central Park on Sept. 2.

According to information released Sunday afternoon, the thired annual walk-a-thon resulted in $19,913 to benefit the Hydrocephalus Association based in San Francisco. The money is used to fund the various programs available by families. The Association supports educations and helps to empower individuals to be their own health advocates.

Paula and Mark Keyser of Largo started this annual event in 2005.

The couple began with a support group picnic at their house in 2004 in hopes of finding other families with the same situation as theirs. Their son, Jeremy, who turned six in July, was born with this condition due to an intraventricular hemorrhage prior to birth. Jeremy's condition is treated with a programmable shunt. Other than a few setbacks and delays, Jeremy is expected to be able to live a normal healthy life. However, shunts do come with complications and their drawbacks.

Hydrocephalus is the "ugly sister" of medical research.

Medical costs exceeds more than $1 billion a year, yet less than $1 million is invested in research cures for the disease, according to Paula Keyser who heads up the Tampa Bay Team Hydrocephalus.

People from all walks of life and from all over the Bay Area attended the walk. There were people inflicted with hydrocephalus participating as well with ages ranging from toddlers to an 83-year-old.

For more information on the local support group, e-mail hydrosupport@gmail.com.
Suzette Porter contributed to this story

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It's a disease that affects more than 375,000 million Americans. There is no cure or no prescription drug treatment. Hydrocephalus is an accumulation of too much spinal fluid on the brain, according to National Institutes of Health. Water actually helps cushion the brain, but too much causes harmful pressure.

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Hydrocephalus support group kicks off program

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Hydrocephalus support group kicks off program

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March 2007

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The Hydrocephalus Support Group of Largo, led by Paula Keyser, has signed a two-year contract with the Hydrocephalus Association to become the Tampa Bay affiliate for a regional support group expansion program.

The San Francisco-based Hydrocephalus Association is a nonprofit organization for people with the condition.

The purpose and goals of the national support expansion effort are to provide support, education and advocacy to all those affected by hydrocephalus at a local level and to influence policy and increase awareness of hydrocephalus nationally.

The Hydrocephalus Support Group of Largo and the Northeast Ohio Hydrocephalus Support Group in Cleveland were selected as the two groups to kick off the regional expansion for the Hydrocephalus Association.

Hydrocephalus, more commonly known as "water on the brain," is an abnormal accumulation of CSF within cavities called ventricles inside the brain.

Hydrocephalus is believed to occur in about two out of every 1,000 births.

For more information, contact Keyser at 415-7339 or e-mail her at tampabayfl@hydroassoc.org.

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Hydrocephalus support group kicks off program

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The Hydrocephalus Support Group of Largo, led by Paula Keyser, has signed a two-year contract with the Hydrocephalus Association to become the Tampa Bay affiliate for a regional support group expansion program. The San Francisco-based Hydrocephalus Association is a nonprofit organization for people with the condition.

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Group supports families affected by hydrocephalus

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Group supports families affected by hydrocephalus

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April 2006

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Nine families gathered for a picnic to continue building a local support group for families dealing with hydrocephalus. The event was a month before Paula Keyser and her family will head to Baltimore for the ninth National Conference on Hydrocephalus with the Hydrocephalus Association.

Two years ago, Paula and her husband, Mark sponsored the first picnic in hopes of finding other families with the same situation as theirs. Their son, Jeremy, who will turn 5 years old in July, was born with this condition due to an intraventricular hemorrhage prior to birth.

Paula's son has been attending McMullen Booth Elementary School in the Pre-K VE program.

Contact Paula Keyser at 415-7339 or e-mail hydrosupport@gmail.com.

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Group supports families affected by hydrocephalus

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Nine families gathered for a picnic to continue building a local support group for families dealing with hydrocephalus. The event was a month before Paula Keyser and her family will head to Baltimore for the ninth National Conference on Hydrocephalus with the Hydrocephalus Association.