Welcome to the Hydranencephaly Information Front Page

Pages in this section:

About Hydranencephaly (information about the brain in Hydranencephaly)	"Research" Results Results of the informal surveys we've done	Dr Shewmon's Article Research paper

Cause of Hydranencephaly	Hydranencephaly Fact Sheet	Neurological Glossary

For more information on Hydranencephaly:

1. Our Frequently asked questions database You can also add your own questions.

The FAQ is also in pdf format (need adobe acrobat to read it) or as a series of 7 brochures you can print out:

2. Informational Brochures on Hydranencephaly
Over the years we have compiled a number of other informational brochures that can be printed and shared.

The fact sheet and Fact Brochure contain the same information but just in a different format. The Fact Sheet is in Word format, the Brochure is in pdf format.

3. The book "Caring For Your Child" with Hydranencephaly.

The 2nd edition of the book, is now complete. This version is much expanded from the first version and includes a lot more information. It will be released in pdf format on cd for a suggested donation of $20.

For more information on the book

To reserve a copy of the book, please contact jeanenehea@comcast.net

Payment can be made at our Paypal account: HydranChildren@yahoo.com

Or, via snail mail to:
Jeanene Headlee
9211 N. Condor Place
Tucson, Arizona, 85742
USA

Help us learn more about Hydranencephaly:
Please fill out our most recent survey on Hydranencephaly. This is a long survey but, to the best of my knowledge is the most comprehensive project which looks at the various characteristics children with Hydranencephaly may have. You can fill out the survey online at: http://www.hostedsurvey.com/takesurvey.asp?c=hydransurvey06 or download it, fill it out and mail it to:

Barb Aleman
11870 285th st.
Maple Ridge, BC
V2W 1L9

Please fill out our database in order to help us to get a better idea of the incidence of Hydranencephaly.

For support:
1. Hydranencephaly Mailing list: This group is for all families, friends and professionals who care for a child with hydranencephaly. It is a place to share joys, concerns and get information. Please note: due to previous problems with people joining the mailing list who didn't have any connection with Hydranencephaly and then causing problems, we ask each person who applies to reply to a letter from one of the moderators telling about your interest in the list. We do not do this to be an exclusive club, but for the security of all on the list.

2.Hydranangels Mailing List: This list is for families who have had a child with Hydranencephaly die.

3. Hydranencephaly Social List This is a list for people ,who are part of the Hydranencephaly list, to go and socialize, send websites, jokes, talk about tv

Go to: About Hydranencephaly for more specific information on Hydranencephaly

Subscribe to the Hydranencephaly Mailing list

August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca