Welcome to HUGS - A Florida Hydrocephalus Support Group

HUGS is a group of families brought together by Hydrocephalus with an Understanding of how important Gathering can be to help and give each other Support. We are located in the Tampa Bay Area in West Central Florida. We have been chosen by the Hydrocephalus Association to be one of two volunteer regional groups to be the first to embark on building the structure for regional expansion. Our group will now be known as the Hydrocephalus Association Tampa Bay Affiliate.

About Us

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.

Jeremy celebrating his 6th birthday in July 2007.	CT Scan slices show blood (white) and fluid (black) at birth and five years later.	Jeremy in the NICU when he was just 2 days old.	Jeremy in the NICU.	Jeremy's battle scars after two brain surgeries before he was four months old.

The Hydrocephalus Association graciously sent us a lot of information to help educate us and ease our minds. I don't know what we would have done without their help. We decided, after we were out of the woods, to start a local support group for families who have to deal with Hydrocephalus. 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 Walkathon in Largo Central Park to raise funds for the Hydrocephalus Association.  Last year, we began to have monthly meetings which has been working out well and our group has now grown to over 100 families who have attended at least one of our meetings.

Paula was chosen by the Hydrocephalus Association in January 2006, to travel out to San Francisco and be part of a focus group to start a regional expansion pilot program. We have signed a two year contract to be a Regional Expansion Group as part of the pilot program. Paula is a volunteer on this Regional Expansion project, but dedicates her time to helping others with this support group.

We do not charge any association fees, but we do encourage membership with the Hydrocephalus Association. 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 six years old and he is doing awesome! We have been very lucky as he has only had to endure three brain surgeries. Jeremy will be going to First Grade in the fall.

"You cannot change the cards you are dealt, but you can change the way you play your hand!"