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Phyllis_R

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1 reviews

Review for Hydrocephalus Association, Bethesda, MD, USA

Rating: 5 stars  

The Hydrocephalus Association (HA) has been a life-saver for our family! When my daughter was diagnosed 22 years ago, we had nowhere to turn and couldn't find any useful information about hydrocephalus. Not only did I call the Association when we received the diagnosis, but I called their support person each time my daughter had a revision (she's had 19) and I had more questions. During one particularly frustrating experience, I called the HA and my question/issue was forwarded to their medical advisory board for input. As a result of the invaluable feedback I received, my daughter now makes more informed decisions regarding pain management during a malfunction.

The Hydrocephalus Association has a LOT to offer families living with this condition. Not only do they offer one-on-one support, the Association publishes newsletters providing families with information on hydrocephalus we wouldn't receive elsewhere, they hold conferences bringing together the leading neurosurgeons, researchers and shunt representatives eager to share the latest and greatest information, they have community networks throughout the country, they hold numerous Walks across the country raising more than $1 million annually to fund their services and research initiatives. There are also many scholarships awarded to young adults with hydrocephalus who are attending college.

This is a wonderful organization!

Role:  Volunteer