FW: ALS INTERNET RESOURCES FAQ

[Guest guest]

ALS INTERNET RESOURCES FAQ

The Internet and World Wide Web contain a tremendous amount of

information on ALS/MND. Support groups, universities, medical and

scientific associations, drug companies, and many individuals are

represented, most with links to other sites. We have collected and

sorted this list to help you in your search for information. (Sites

are not evaluated for content so their presence on this list is not

to be considered a recommendation nor a guarantee of the reliability

of the information they contain.)

We have also developed a separate FAQ listing Internet resources for

equipment commonly needed by ALS patients which will be posted along

with this one.

Your input into keeping this list updated will be most appreciated.

Please e-mail me with any additions or corrections: liveletdie@...

CONTENTS:

Advocacy Organizations

ALS Societies and Support Groups

Bulletin Boards (classified ads)

Business/Commercial (See separate FAQ for adaptive equipment websites)

Internet ALS Discussion Forums (newsgroups, email-lists, bulletin

boards, chat rooms)

Internet Newsletters, Magazines

Medical/Scientific

Personal Webpages (PALS webpages)

ADVOCACY ORGANIZATIONS

ALS Advocacy

http://pages.prodigy.com/ALSPROD/

ALS Society

http://www.alsa.org

ALS March of Faces: A patient/caregiver governed and operated

non-profit organization, dedicated to heightening public awareness

of ALS, and advocating on issues that concern and/or benefit PALS

http://www.march-of-faces.org/

CINI Communication Independence for the Neurologically Impaired

http://www.cini.org

Hope For ALS. Non-profit corporation to raise awareness and monies

for research on treatments for ALS

http://www.hopeforals.com/

Project A.L.S., Inc. is a non-profit organization that raises

awareness and significant funds toward effective treatments and a

cure for ALS

http://www.projectals.org

Team ALS: Team ALS's goal is to increase ALS awareness and raise

money to fund ALS research projects by organizing, promoting, and/or

participating in Marathon races.

http://www.geocities.com/teamals

The ALS Therapy Development Foundation uses entrepreneurial spirit

and techniques to seek out and develop promising therapies to slow,

arrest, and cure ALS.

www.als-tdf.org

ALS SOCIETIES AND SUPPORT GROUPS

ADELA C.V.(Asociacion Valenciana de Esclerosis Lateral Amiotrofica)

Espanol: http://www.adela-cv.org/

ALS/MND Association of Spain

http://www.advernet.es/adela

ALS Canada:

http://www.ALS.ca

ALS Association (USA):

http://www.alsa.org

ALS Association, Minnesota Chapter

http://www.thehealthfund.org/als.html

ALS Association, Greater New York Chapter

http://www.als-ny.org/

ALS Association, Greater Philadelphia Chapter

http://www.als-phila.org/

ALS Association, Tampa Bay Chapter, providing services to the ALS

community on the west central coast of Florida.

http://www.als-tampabay.org/

ALS Association, Massachusetts Chapter

http://als-ma.org

ALS Association Northeast Ohio Chapter

http://www.alsaohio.org

The ALS Association / North Texas Chapter

http://www.alsanorthtexas.org

ALS Center of Oregon

http://www.alsoregon.org/

ALS Society of British Columbia

http://www3.telus.net/alsbc/index.html

ALS Society of Ontario:

www.alsontario.org

APELA - Association of Portugese ALS Patients

Mailto: " Hugo Costeira "

Belgian ALS Ligue

http://home.planetinternet.be/~alsvzwbe/test/qd000000.html

Caregiver Magazine

Information, support and guidance for family and professional

caregivers.

http://caregiver.com/

International Alliance of ALS/MND Associations

http://www.alsmndalliance.org

Irish Motor Neurone Disease Association

http://www.iol.ie/~killeen/stevemnd/imndesc.htm

Les ALS Foundation

http://www.lesturnerals.org

MND Association of Australia

www.vicnet.net.au/~mndaust

MND Assocciation UK : explanation of motor neuron diseases, info on

services available, Helpline, research.

http://www.mndassociation.org

Muscular Dystrophy Association

http://www.mdausa.org

http://www.mdausa.org/publications/alsnews.html

Scandinavian ALS Webpage

http://www.geocities.com/HotSprings/Spa/9932/

ish Motor Neurone Disease Association

http://www.scotmnd.org.uk

Vereniging Spierziekten Nederland (VSN) ALS Diagnostic Support Group

http://www.vsn.nl

Web Of Care: Webpage for those caring for ill or disabled at home.

Information, support, and links to supplies, animated lessons in

caregiving skills, chat rooms, bulletin boards and more.

http://www.webofcare.com/

BULLETIN BOARDS (classified ads)

Med-Sell: buy and sell used medical equipment and find accessible

housing.

http://www.nccn.net/~medsell/welcome.htm

The Free Personal Care Aid Connection. Board to post want ad for

caregivers or caregiving position wanted.

http://www.pca-hha.com/

BUSINESS/COMMERCIAL

http://artbyburris.homestead.com/index.html

original paintings, prints, notecards, christmas cards by award winning

artist Burris who has ALS.

" Hahn - Friends " a 2-CD 21 song music set. With post ALS

compositions featuring " Magik " as heard on CBS 60 minutes.

http://kylehahn.com/friends/index.html

Painting sales contribute to als research

http://www.LDeem.com

Travel Care Companions: Company providing caregivers for traveling

disabled people.

http://www.travelcarecompanions.com

The Artist Within: Greeting cards by PAL

http://hometown.aol.com/artistwi/index.html

Steve Fowler

Purchase of CD's by Steve Fowler, a musician now disabled by ALS help

fund ALS research

http://www.emdbd.com/stevefowler/

INTERNET ALS DISCUSSION FORUMS

(newsgroups, email-lists, bulletin boards, chat rooms)

Newsgroup: sci.med.diseases.als

AD/ELA: DIALOGOS SOBRE LA ELA: ALS E-mail magazine in Spanish: contact

Ruiz at Mailto:adela@...

ALS Digest: A weekly E-mail newsletter dedicated to spreading ALS info.

To subscribe contact Bob Broedel at bro@... ; or contact

Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA.

Back issues of the ALS Digest are available on-line at:

http://www.glnicholas.com

Living-with-ALS Mailing list: A mail-list focused on support for PALS

& CALS and the exchange of information related to ALS. To join the

list, register with http://groups.yahoo.com/group/living-with-als and

subscribe to Living-with-ALS.

Other mailing lists/discussion groups are always being added to Yahoo

Groups. Go to http://groups.yahoo.com/ and do a search for " als " and

for " Lou Gehrig " to see the list of groups.

Bulletin Boards:

America Online subscribers' ALS bulletin board: To get there: Keyword -

BHBoards, click General disAbilities

CompuServe subscribers' ALS bulletin board: Click on Go; Type mdaforum;

Read disclaimer then select Proceed, which sends you to the MDA forum.

Now you can browse the library or the message sections, both of which

offer information on ALS

Prodigy subscribers' ALS bulletin board:

jump Medical support bulletin board, subject: neurological, topic: ALS

Doug's Discuss ALS Bulletin Board

http://www.lougehrigsdisease.net/disc2_frm.htm

Steve's ALS Bulletin Board

http://www.yourbbs.com/v2/index.cgi?bbs=4727

Chat Rooms:

OZPALS

http://www.petrie.starway.net.au/~sunbeams/

's PALs Yahoo .

http://clubs.yahoo.com/clubs/paulspals

Web Of Care: Webpage for those caring for ill or disabled at home.

Information, support, and links to supplies, animated lessons in

caregiving skills, chat rooms, bulletin boards and more.

http://www.webofcare.com/

http://www.rideforlife.com/live_chat.htm

INTERNET NEWSLETTERS, MAGAZINES

Brick by Brick OnLine ALS Newsletter

http://www.march-of-faces.org

ADELA: DIALOGOS SOBRE LA ELA: ALS E-mail magazine in Spanish: contact

Ruiz at Mailto:adela@...

MEDICAL/SCIENTIFIC

ALS Society

http://www.alsa.org

Basic Neurology Made Easy: Explanations of the anatomy and what goes on

within the nervous system which will help you understand the disease

process, diagnostics, research, etc.

www.fortunecity.com/greenfield/buzzard/387

Baylor College of Medicine, Department of Neurology MDA/ALS CLINIC

http://www.bcm.tmc.edu/neurol/struct/als/als1.html

Center for ALS Research at s Hopkins. Information on current

research aimed at treatment and ultimate cure of ALS being done at

the center or funded by the center.

http://www.neuro.jhmi.edu/alscenter

Drug InfoNet; ALS:

http://www.druginfonet.com/lougerig.htm

http://www.medicare.gov/NHCompare/home.asp

Medicare

http://www.medicare.gov

also: http://www.medicare.gov/NHCompare/home.asp

This site lists all accredited nursing homes, gives info on size,

patients, ratings in most recent survey, and staffing ratios.

NOAH (New York Online Access to Health) seeks to provide high quality

full-text health information for consumers that is accurate, timely,

relevant and unbiased. NOAH currently supports English and Spanish.

Several articles dealing how to evaluate medical information, especially

research reports.

http://www.noah-health.org/english/ebhc/ebhc.html

Neurosciences on the Internet

US: http://www.neuroguide.com/

UK: http://www.genetics.gla.ac.uk/neil/index.html

Germany: http://ilsebill.biologie.uni-freiburg.de/neuromirror/index.html

Australia: http://cortex.mhri.edu.au/%7Enab/index.html

PLS Consulting: ALS Doctor's Guide to the Internet:

http://www.pslgroup.com/ALS.HTM

Washington U Med School (St.Louis, MO); Neuromuscular Disease Center

http://www.neuro.wustl.edu/neuromuscular/

World Federation of Neurology; Amyotrophic Lateral Sclerosis

http://www.wfnals.org

PERSONAL WEBPAGES

Al's ALS Resource Page

A large collection of links to websites of interest to PALS, organized

into categories

http://www.alslinks.com/

Bill Kibbie

Kibbie's Personal Experience in Managing and Living with ALS

Since 1973

www.alsisnotfatal.com

Birger Bergmann Jeppesen's page, English and Danish:

http://home5.inet.tele.dk/bbj/als.htm

Dean Chioles' page:

http://www.shoptown.com/dean/

Diane's ALS website:

Practical tips and nursing care for ALS, written by a nurse with ALS

http://home.att.net/~liveletdie5/ALS

Doug Eshleman's ALS Survival Guide

A wealth of information on the disease and its progression, news

updates, legal/financial issues, equipment needs, links, articles by

" guest speakers "

http://www.lougehrigsdisease.net

Doug son's ALS page:

http://home.earthlink.net/~jakesan/

Jean-Marie Quiquempois, en francais Guitare et Neurologie (French)

http://www.geocities.com/BourbonStreet/Delta/3573

Ruiz Gimenez' page:

http://bbs.seker.es/~adela

's Town

http://johnztown.tripod.com/johnstown/

McMullen's page:

http://www.mindspring.com/~jmcmulln/als.html

Judy's home page

http://members.aol.com/mrsre/index.html

A vent dependent long term survivor.

Margit's Internet Corner

http://www.iinet.net.au/~mic

Zaslow's Zazangels page:

www.michaelzaslow.com

Mikki Lawson: The ALS Reporter

http://www.tapa.com/makahiki.html

's ALS Page

http://homepages.msn.com/SupportSt/shimbleshanks/index.html

Raising Hope

http://rampages.onramp.net/~jpyenom

Info on ALS, treatments, research, new items, forum for posting messages,

links,

Books, cassettes, etc. purchased from Amazon.com using links from this

page will generate a 5-15% donation to fight ALS

Steve's ALS / MND Site

www.steveholly.com

Steve Fowler, a musician now disabled by ALS shares his story, offers

abstracts of research articles

http://www.emdbd.com/stevefowler/

Steve Killeen's web-site:

http://www.iol.ie/~killeen/stevemnd/stevehom.htm

Shackel's page:

http://www.goulburn.net.au/~shack/

Steve Weekes page, a well organized page of links to Internet ALS

resources

http://www.geocities.com/sweekes99/ALStitle.html

Debbie Tope's website

http://www.focusonals.com/

THEmegers Place

http://expage.com/THEmeger

Turning Points in ALS, Wayne

http://www.geocities.com/HotSprings/Falls/7437/tpals.htm

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