Resources for People Interested in Spina Bifida & Related Disorders
Linda Rowley
An Internet Guide . . .
Resources for People Interested in
Spina Bifida & Related Disorders
By Linda Rowley - Coordinator of the Family Village Project
http://www.familyvillage.wisc.edu/
Updated June 1997
This list is designed to give individuals a starting point for
their exploration of the Internet. It is not intended to be a
comprehensive list. If you know of other on-line discussion
groups or web sites that should be included in future updates
of this list please contact Linda Rowley at
row...@waisman.wisc.edu.
World Wide Web Sites
Spina Bifida:
Spina Bifida Association of America Web Site
http://www.infohiway.com/spinabifida/
Spina Bifida Association of America Chapter List
http://www.infohiway.com/spinabifida/chapter.html
Spina Bifida Clinics - United States
http://www.infohiway.com/spinabifida/clinics.html
Children with Spina Bifida: A Resource Page for Parents
http://www.waisman.wisc.edu/~rowley/sb_kids.htmlx
Hydrocephalus:
The Hydrocephalus Foundation
http://neurosurgery.mgh.harvard.edu/HyFI/
Steve's Hydrocephalus Page
http://web.syr.edu/~sndrake/hyd1.htm
Arnold Chiari:
World Arnold Chiari Malformation Association Web Site
http://www.geocities.com/HotSprings/2830/
Dandy-Walker Syndrome:
Dandy Walker Syndrome
http://www.geocities.com/Heartland/Hills/3919/dws.html
Lipomyelomeningocele:
Lipomyelomeningocele Family Support Network
http://develop.mainquad.com/web/chrisMc/support.html
Syringomyelia:
Syringomyelia
http://www.syringo.org/
Latex Allergy:
Nancy Mitchell's Latex Allergy Web Site
http://pw2.netcom.com/~nam1/latex_allergy.html
Incontinence:
Childhood Incontinence Web Site
http://village.ios.com/~tis/child.html
Personal Web Pages:
Children with Spina Bifida Web Page List
http://WWW.Waisman.Wisc.Edu/~rowley/sb-kids/pweb.htm
Neurology and Neurosurgery Related Sites:
Neuroscience Web Search
http://www.acsiom.org/nsr/neuro.html
National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov/
Pediatric Neurosurgery Home Page - Columbia-Presbyterian Medical Center
http://cpmcnet.columbia.edu:80/dept/nsg/PNS/
Information of Neurosurgical Interest - Massachusetts General Hospital
http://neurosurgery.mgh.harvard.edu/other2.htm
Neurological Disorders in Children - Beth Israel Medical Center
http://www.bethisraelny.org/inn/index.html
Communicating with Others On-Line
Mailing Lists:
A mailing list is simply a list of e-mail addresses of people interested
in a particular subject. All you have to do to get on a mailing list is
to "subscribe" by sending email to the list administrator. Once you
subscribe, your email address will be added to the mailing list, and
you'll start receiving messages from other list members. You may reply
to these messages or start new discussions. Any message you
send to the email list address will be automatically distributed to
every member of that list.
Spina Bifida Internet Mailing Lists
SB-Parents
Forum for the discussion of the care of children with spina bifida.
To join send an e-mail message to:
list...@waisman.wisc.edu
Leave the subject line blank.
In the body type exactly:
Subscribe SB-Parents Your-First-Name Your-Last-Name
Bifida-L
General spina bifida discussion forum.
To join send an e-mail message to:
list...@mercury.dsu.edu
Leave the subject line blank.
In the body type exactly:
Subscribe Bifida-L Your-First-Name Your-Last-Name
Related Internet Mailing Lists
HYCEPH-L
People interested in hydrocephalus.
To subscribe, send an e-mail message to:
list...@listserv.utoronto.ca
Leave the subject line blank.
In the body of the message type:
Subscribe HYCEPH-L Your Name
HCONF
A conference forum - guest "speakers" attend 2-3 week long
discussions on topics that related to hydrocephalus.
To subscribe, send an e-mail message to:
list...@listserv.utoronto.ca
Leave the subject line blank.
In the body of the message type:
Subscribe HCONF Your Name
LMC-TCS
For parents of children with lipomyelomeningocele and tethered
cord syndrome.
To join send an e-mail message to:
majo...@avenza.com
Leave the subject line blank.
In the body of the message type:
Subscribe lmc-tcs Your E-mail Address
TCS-AA
List for adults with Tethered Cord Syndrome
To join send an e-mail message to:
majo...@avenza.com
Leave the subject line blank.
In the body of the message type:
Subscribe tcs-aa Your E-mail Address
ASAP-L
Anyone interested in syringomyelia.
To join send an e-mail message to:
list...@maine.maine.edu
Leave the subject line blank.
In the body of the message type:
Subscribe asap-l Your Name
Rubber
Rubber and Latex allergy discussion list.
To join send an e-mail message to:
list...@tamu.edu
Leave the subject line blank.
In the body of the message type:
Subscribe Rubber Yourfirstname Lastname
CHIARI
Arnold-Chiari Malformation Discussion List
To join send an e-mail message to:
chiari-...@icus.com
Leave the subject line blank.
In the body of the message type:
Subscribe
Newsgroups:
A newsgroup is like a centralized bulletin board where you go to look
at messages people post. If you have a news reader
program and access to Usenet, you may read any message posted on any
newsgroup. In this sense, newsgroups are more open
than mailing lists because you do not need to send an e-mail message
to an administrator to be able to follow the discussions.
Spina Bifida Newsgroup: alt.support.spina-bifida
Allergy (latex) Newsgroup: alt.med.allergy
Web Board:
As with newsgroups, web boards are like a centralized bulletin boards.
Instead of Usenet, you access web boards through the
World Wide Web. There is a Spina Bifida Web Board at the Massachusetts
General Hospital Web Site. The address is:
http://dem0nmac.mgh.harvard.edu/neurowebforum/SpinaBifidaMenu.html
Chatting:
Chat allows people to talk in real time on the Internet. The following
are a few of the different routes you can take to chat with other
people on-line.
Web Chat:
The Massachusetts General Hospital Web Site has a chat room. You need
to register to participate. For more information on this chat room,
see:
http://neuro-www3.mgh.harvard.edu/interaction$/chat/index
AOL Chat:
There is a scheduled spina bifida chat on America On Line. You must be
an AOL subscriber to join. See this web site for more
information:
http://www.ultranet.com/~patrickc/aolpage.htm
Internet Relay Chat (IRC):
Chat in real time with special software.
#spina_bifida - Spina bifida Chat Channel
http://www.geocities.com/HotSprings/2474
E-mail: spina...@geocities.com
#HydroHaven - Hydrocephalus Chat Channel
http://www.geocities.com/Heartland/6950/pcirc.html
The most recent copy of this document can be found at:
http://www.familyvillage.wisc.edu/spinabifida.html
Revised June 1997
This Internet Guide is made possible through grants from the Joseph P.
Kennedy Jr., Foundation & the Mitsubishi Electric America Foundation.
The contents of this publication do not necessarily reflect the views or
policies of the Joseph P. Kennedy Jr., Foundation or the Mitsubishi
Electric America Foundation, nor does mention of trade names, commercial
products or organizations imply endorsement by the Joseph P. Kennedy
Jr., Foundation, the Mitsubishi Electric America Foundation or the
Waisman Center at the University of Wisconsin - Madison.
This information is in the public domain unless otherwise indicated.
Readers are encouraged to copy and share it, but please credit the
Family Village Project at the Waisman Center.
MerryWalk
Hi, I would like more information about spina bifada- also I would like to
place a resource of the Merry Walker web page- as a device that is new to
the marketplace in helping children with spina bifada walk independently-
please look at the site at www.merrywalker.com. It might be of interest to
your readers as well. Thank you--
Susan Harroun-- Merr...@aol.com