PALS Websites and Useful Links

[BobbyB]

Welcome to the ALS/MND Registry
http://www.patientslikeme.com/registry

http://www.patientslikeme.com/images/logo_beta.gif
http://www.patientslikeme.com/user/login


http://www.enjoyyourlife.ch/images/alstdflogo1.jpg
ALS TDF
http://www.als.net/default.asp

Build-UK Chat Forums
http://www.magimedia.co.uk/buildforum/viewforum.php?f=1&sid=3b60c458ef77eb56472f2b25b2148671

Ride for Life
http://www.rideforlife.com/

Living with ALS
http://health.groups.yahoo.com/group/living-with-als/messages

http://www.quackwatch.org/css/images/fp_logotype.gif
http://www.quackwatch.org/

The Irish MND association
http://www.imnda.ie/index.cfm/loc/1.htm

CareCure Forums
http://sci.rutgers.edu/forum/index.php

http://www.eurekalert.org/index.php

http://www.extrahands.org/images/logo.gif
http://www.extrahands.org/
http://www.geocities.com/sweekes99/ALStitle.html

http://www.permobilusa.com/templates/startpage.aspx?id=806
http://www.mattschallenge.com/
http://brainhell.blogspot.com/
http://als.mdausa.org/

http://www.alscenter.org/images/navigation/top/robert_packard_logo.gif
http://www.packardcenter.org/

The Jazzy
indoor/outdoor Power Chair.
http://www.accessusaonline.com/davismobility/2.htm

http://www.whatisals.com/
http://www.alsaiowa.org/index.html
http://alsnetwork.com/
http://www.cagw.org/site/PageServer
http://www.chadscorner4pals.com/
http://www.als-options.com/als-links.html
http://www.indestructiblefilm.com/2/home.html
http://www.kylehahn.com/
http://www.leahymusic.com/theband/
http://www.alsmndalliance.org/directory/
http://www.curezone.com/forums/f.asp?f=482

http://www.march-of-faces.org/images/alsmof-01.gif
http://march-of-faces.org/

http://www.alsa.org/policy/alsday.cfm
http://home.goulburn.net.au/~shack/
http://home.comcast.net/~mrsre/
http://tpals.org/meds.htm
http://www.enjoyyourlife.ch/kontakt.html
http://health.groups.yahoo.com/group/Wisconsin-ALS/messages

http://homepage.mac.com/jakesan/DHP/page8/page15/files/page15_5.jpg
http://www.projectals.org/

http://www.sanofi-aventis.us/live/us/en/layout.jsp?scat=8D52920D-5655-4CCB-A499-EE05C6172519

http://www.wrongdiagnosis.com/a/amyotrophic_lateral_sclerosis/intro.htm
http://www.sammonspreston.com/
http://www.pat.org/classi.html
http://www.wheelchair-van.com/wheelchair_van.php
http://sanlab.kz.tsukuba.ac.jp/HAL/indexE.html
http://www.virtualblueridge.com/parkway_tour/overlooks.asp

http://www.disabilitynow.org.uk/timetotalksex/timetotalksex_feat1.htm
http://www.alscenter.org/
http://www.als-pls.org/Learn.htm

http://www.mndassociation.org/display_images/mnda_logo.gif
http://www.mndassociation.org/
http://www.alswarriorpoet.com/
http://www.survivingals.com/default.html
http://www.living-with-als.org/index.html
http://www.alsa.org/resources/magazine.cfm

http://www.cdc.gov/i/logo.gif
http://www.cdc.gov/

http://als-net.gr/istorikouk.htm
http://www.alsalabama.org/
http://homepage.ntlworld.com/rob.shaz/
http://forums.braintalk2.org/forumdisplay.php?s=&daysprune=&f=6
http://www.google.com/language_tools

http://www.iriscom.org/
http://rynomobility.com/RampTruckMedia.htm
https://als.clinicahealth.com/index.pl
http://www.petitiononline.com/create_petition.html
http://cnr.iop.kcl.ac.uk/recordings/dublin_ALS/speechi.html
http://carlinalsfund.org/index.html
http://www.permobil.com/default.aspx?id=4
http://www.patrickobrienfoundation.org/
http://www.clinicaltrials.gov/html/images/ctgov_logo_ttl.gif
http://www.clinicaltrials.gov/ct/action/GetStudy

http://www.stemcellpals.com/mstory/storymy.htm
http://kildare.ie/Voluntary/irish-wheelchair-association/INDEX.HTM
http://racewilly.tripod.com/davespalspage/index.html
http://brewgrassfestival.com/
http://www.alsconnection.com/
http://www.alscharity.org/index.html
http://www.alsindependence.com/What's_Happening.htm
http://www.wayfaring.com/maps/show/14508
http://en.wikipedia.org/wiki/Main_Page
http://www.gatesfoundation.org/GlobalHealth/OtherInitiatives/Advocacy/CES_Grantmaking.htm

MDA/ALS Research Centers

These 37 facilities at major medical institutions have been designated MDA/ALS Research Centers, indicating that they’re focal points of MDA’s ALS program. However, excellent care for ALS is available at all of MDA’s 235 clinics. For an appointment, please contact your local MDA office; for further information about the centers see www.mda.org/clinics/alsserv.html.


http://www.alsaco.org/index.cfm?content=blog
http://all.jurkat.biz/phpBB2/viewforum.php?f=1
http://www.eyeresponse.com/Disabilities/
http://www.gloryinweakness.com/forums/index.php
http://www.stemcell.no/
http://livingwithals.net/index.html
http://www.mobilityconcepts.org/index2.html
http://spaces.msn.com/steveayse/
http://www.israls.org/israls_english.htm
http://forum.als-net.gr/viewtopic.php?t=107
http://alsnetwork.com/useful.htm
http://www.march-of-faces.org/aboutus/
http://www.alsa.org/exchange/article.cfm?id=804#5
http://www.sambush.com/



http://www.alslinks.com/

http://www.amsvans.com/index.asp
http://www.braunlift.com/
http://www.assistivetech.com/prod-index.htm
http://www.lakefolks.org/cnt/
http://www.etriloquist.com/index.html
http://www.vestil.com/wc/extreme4x4.htm

http://eyeresponse.com/

http://www.focusonals.com/images/design1.jpg
http://www.focusonals.com/index.htm

http://www.govbenefits.gov/govbenefits_en.portal
http://www.immly.org/
http://www.magitek.com/
http://www.massgeneral.org/neurology/index.asp
http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/amyotrophiclateralsclerosis.htm

http://www.quackwatch.org/
http://www.easypivot.com./
http://www.directory.net/Society/Disabled/Travel/Rental_Vans_and_Hand-Controls/
http://www.sciencemag.org/feature/data/als/
http://www.discountwheelchair.com/discountwheelchair_001.htm
http://www.myskeletonkey.com/forum/templates/subSilver/images/logo_phpBB.gif
http://www.myskeletonkey.com/

http://www.angletechcycles.com/bikes/special_needs_bikes.htm
http://www.educational-software-directory.net/special-needs/
http://www.gusinc.com/
http://www.blvd.com/agraphics2/blvd_logo.jpg
http://www.blvd.com/
http://www.eyegaze.com/2Products/Disability/Disabilitymain.htm
http://tpals.org/ftube.htm
http://tpals.org/index.htm
http://www.viewpointmobility.com/
http://www.neospeech.com/

ALS Links

www.alsa.org[/url]
www.projectals.org[/url]

www.lesturnerals.org[/url]
www.rideforlife.com
www.ericiswinning.com
http://alstherapy.info

red wrist bands.
www.nevergiveup4pals.org
United Kingdom ALS Support
www.build-uk.net
Spanish ALS Association
www.advernet.es/adela
German ALS Support
www.als-site.de
Scandinavian ALS Web Site
www.sasdx.com
Belgian ALS Support Group
www.ALS-MND.be
Google Language Tools
http://www.google.com/language_tools

http://www.etriloquist.com/graphics/EtriloquistLogo.gif
http://www.etriloquist.com/

E-triloquisttm is a PC-based communication aid for a speech impaired person.
It serves as an electronic voice for those who can't speak on their own.

[BobbyB]

http://www.wheelchairjunkie.com/mainmenuelogo.jpg
http://www.wheelchairjunkie.com/


http://www.usatechguide.org/core_images/banner.jpg
http://www.usatechguide.org/
USA TechGuide
Empowerment by Choice
A Web-Guide To Wheelchairs & Assistive Technology Choices
Peer to Peer Wheelchair Reviews & Assistive Technology Resources

Read or Post Look For Think About
Wheelchair Reviews by Users Equipment & Devices Wheelchair Diffusion
Cushion Reviews by Users
Wheelchair Rec. & Sports, Wheelchair Wisdom
Scooter Reviews by Users Accessible Travel Wheelchair Lemon Laws
Stander Reviews by Users Wheelchair Accessible Vans Canes To Wheelchairs:
Considering Mobility Devices


http://www.build-uk.net/links/builduk_banner_wide.jpg
http://www.magimedia.co.uk/buildforum/viewforum.php?f=1&sid=3b60c458ef77eb56472f2b25b2148671

Choosing a Powered Wheelchair
http://www.assistireland.ie/index.asp?locID=181&docID=6557

The Happy Hutter
http://thehappyhutter.blogspot.com/

Austria http://als.themenplattform.com/128291.1/
Belgium www.ALS-MND.be
Croacia mailto: marija.sostarko@zg.tel.hr
Denmark www.muskelsvindfonden.dk
Finland www.lihastautiliitto.fi
France www.ars.asso.fr/

www.multimania.com/als/
Germany www.dgm.org
Ireland www.iol.ie/~killeen/stevemnd/imndesc.htm
Island www.mnd.is
Israel mailto:vdrory@post.tau.ac.il
Italy www.aisla.it
Netherland www.vsn.nl

www.als-centrum.nl
Norway http://www.alsweb.no/
www.geocities.com/HotSprings/Spa/9932/

Poland
http://www.idn.org.pl/szczecin/tzchm-szczecin/strony/sla.htm
http://www.fundacja-sm.malopolska.pl/strony/kolo_sla.htm

Scotland www.scotmnd.org.uk
Spain www.adelaweb.com
Sweden http://www.sos.se/smkh/1998-29-078/1998-29-078.HTM
Switzerland ALS -Ratgeber für Betroffene & Angehörige: http://www.neurohelp.ch/als.htm
other CH languages : http://www.hon.ch/HONselect/RareDiseases/C10.228.854.139.html

Turkey mailto:Coskunoz@superonline.com
UnitedKingdom www.mndassociation.org

http://www.catfishchapter.org/images/wristband2.jpg

Strike Out ALS Wristbands
Now you can help us spread the word about ALS with these fashionable silicone awareness bands. These bracelets are a great way for you to show your dedication to Striking Out ALS.

Donate online now and start spreading awareness! Each bag costs $20.00 and includes 10 bracelets (they are not available individually at this time). From there, it's up to you! You can sell them to your friends and family at our suggested price, or give them away. They also make great Walk Team fundraisers. A flat shipping and handling cost of $2.00 will be applied to each order.

If you prefer to order your wristbands by mail, click here for a printable order form. Mail your form and donation to:

The ALS Association - Jim "Catfish" Hunter Chapter
Strike Out ALS Wristbands
120-101 Penmarc Drive
Raleigh, NC 27603

If you want to order more than 100 Strike Out ALS Wristbands, you can either do multiple transactions online or you can call Mandy toll free at 1-877-568-4347 to make your order by phone.

Buy your Strike Out ALS Wristbands NOW!
http://www.catfishchapter.org/help/Wristbands.html


http://www.dreamfoundation.org/images/df_top_header.gif
http://www.dreamfoundation.org/

Packard Center for ALS Research at Johns Hopkins University

www.hopkinsmedicine.org/alscenter

The ALS Therapy Development Foundation
www.als.net

ALS Association's Jim "Catfish" Hunter Chapter

www.catfishchapter.org
www.alsa.org

The ALS Center of Wake Forest University Baptist Medical Center
www.wfubmc.edu/neurology/als/




Helpful Sites for PALS and CALS

ALSlinks.com "An Internet Portal for the ALS Community"
www.alslinks.com

The ALS Survival Guide
www.alssurvivalguide.com

ALS and Associated Websites (a comprehensive collection of ALS resources)

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



Other ALS Non-Profit'S

Ride for Life
www.rideforlife.com

Project ALS
www.projectals.org

Hope for ALS
www.hopeforals.com

Les Turner ALS Foundation
www.lesturnerals.org

March of Faces
www.march-of-faces.org

The Fran Delaney Foundation
www.frandelaney.org

The Muscular Dystrophy Association
http://www.mdausa.org

MDA's ALS Newsletter
http://www.mdausa.org/publications/als/index.html

The ALS Association
http://alsa.org/

Ride for Life Online
http://www.rideforlife.com

Project ALS
http://www.projectals.org

ALS Links - Internet Portal for the ALS Community
http://www.alslinks.com

International ALS Clinics and Research Centers
http://www.alslinks.com/clinicsinternational.htm

International Alliance of ALS/MND Associations
http://www.alsmndalliance.org

The ALS Society of Canada
http://www.als.ca

Focus on ALS - site created by a PALS for PALS
http://www.focusonals.com/



Coalition for the Advancement of Medical Research
http://www.camradvocacy.org/

Stem Cell Information - the official NIH resource
http://stemcells.nih.gov/index.asp

Stem Cell Action
http://www.stemcellaction.org/

Laboratory for ALS Research, San Diego
http://ludwig.ucsd.edu/ClevelandLabCMM/ALSgroup.html

ALS Digest (online newsletter). Archive is available at http://www.alslinks.com/alsdigestarchives.htm.
CLINICAL TRIALS

MUSCULAR DYSTROPHY ASSOCIATION
http://www.mdausa.org/research/ctrials.cfm

ALS ASSOCIATION
http://www.alsa.org/research/drugdev.cfm

NATIONAL INSTITUTES OF HEALTH
http://www.clinicaltrials.gov/

ALS Association (USA):
http://www.alsa.org/

ALS Association, Greater Philadelphia Chapter
http://www.als-phila.org/

Motor Neurone Disease Association (UK)
http://www.businessconnections.com/mnd/mnd.htm

Irish Motor Neurone Disease Association
http://www.iol.ie/~killeen/stevemnd/imndesc.htm

Deutsche Gesellschaft f r Muskelkranke
http://weka.rpr-cologne.de/

ADELA (Association Espanola de Esclerosis Lateral Amiotrofica)
http://www.seker.es/adela

AMELA (Asociacion Madrilena de ELA)
http://www.servicom.es/amela/0 AMELA.HTM

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



Medical/Scientific/Commercial

The John Bevan MND Research Unit:
http://http1.brunel.ac.uk:8080/~hssrsdn/alsig/als_rsrc.htm

Cleveland Clinic Foundation:
http://www.ccf.org/ed/pated/events/als.htm

Baylor College of Medicine, Department of Neurology MDA/ALS CLINIC
http://www.bcm.tmc.edu/neurol/struct/als/als1.html

Washington University School of Medicine (St. Louis, MO); Neuromuscular Disease Center
http://www.neuro.wustl.edu/neuromuscular/

Neurosciences / United States:
http://www.lm.com/~nab/

Neurosciences / United Kingdom:
http://www.genetics.gla.ac.uk/neil/index.html

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

Drug InfoNet; ALS:
http://www.druginfonet.com/lougerig.htm

PLS Consulting: ALS Doctor's Guide to the Internet:
http://www.pslgroup.com/ALS.HTM

The Glaxo Neurologic Centre
http://www.connect.org.uk/merseyworld/glaxo/

American Academy of Neurology:
http://www.aan.com/public/bals.html

The Birmingham Neuroscience WWW pages
http://medweb.bham.ac.uk/clin_neuro.html

Neuroscience Resources: A component of The World-Wide Web Virtual Library; Cornell University Medical College Department of Neurology and Neuroscience
http://neuro.med.cornell.edu/

http://www.aavans.com/images/top/top.jpg
http://www.aavans.com/

[BobbyB]

pals Websites

ADD YOUR SITE OR IF YOU KNOW OF ONE PLEASE.

///////////////////////////////////////////////////////////////

http://www.chadscorner4pals.com/
http://www.indestructiblefilm.com/2/home.html

http://www.kylehahn.com/Media/Gif/KYLE_CAPITOLDC_ONSTAGE.GIF
http://www.kylehahn.com/

http://home.comcast.net/~mrsre/
http://tpals.org/index.htm
http://als-net.gr/istorikouk.htm
http://homepage.ntlworld.com/rob.shaz/
http://steveayse.spaces.live.com/
http://www.alslinks.com/
http://www.scnature.com/
http://www.siteone.com/health/woodard/index.html
http://home20.inet.tele.dk/heaven/en/index.htm


Jeannie
My blog http://jeannie-world.blogspot.com/
My website http://uk.geocities.com/jeannie_25als@btinternet.com/

ALS/MND CHATROOM http://client1.sigmachat.com/sc.pl?id=144320
http://uk.geocities.com/jeannie_25als@btinternet.com/
http://groups.msn.com/duckiesbitofmsn/_homepage.msnw
http://www.geocities.com/mannco74/
http://www.onefivenine.info/johnclose.htm
http://www.als-gruppen-vestjylland.dk/
http://www.geocities.com/crafttmk/countryside.html
http://lindenwoods.tripod.com/
http://www.wheelsworld.co.uk/
http://www.justgiving.com/franceslowe
http://www.alsalternative.com/
http://www.als-project.com/
http://walk.catfishchapter.org/site/TR?pg=team&fr_id=1190&team_id=7240
http://robertmnd.blogspot.com/
http://www.justgiving.com/granmac

http://home.goulburn.net.au/~shack/
http://brainhell.blogspot.com/
http://home.earthlink.net/~leonpeek/
http://www.johnsjourney.org/
http://www.patrickobrienfoundation.org/
http://hometown.aol.com/abe11/Davesindex.html
Serge J Vincent
http://www.als.ca/events/mysite.aspx?fid=783&AdminMenu=1

http://home.goulburn.net.au/~shack/Images/WebsiteHeader.jpg
http://home.goulburn.net.au/~shack/

Kramer Family Homepage
http://home.pacbell.net/ranger-1/

Joel Cutler's Website
http://www.als.ca/events/mysite.aspx?fid=561


http://alswarriorpoet.com/als.html
alswarriorpoet.com/als.html

Alive and Kicking with ALS
http://www.karalynn.net/index.html

[BobbyB]

http://www.winhealth.co.uk/old_man_cruising_on_scooter_md_wht.gifDont get lost.............

PALS / CALS – PERSONAL WEB SITES:
Note: Names in bold are PALS / CALS Web Sites that have been in existence for more than five years.Compiled By: Steve Weekes ( sweekes99@yahoo.com )

(Listed Alphabetically by First Name)
Al Pickens’ Web Site: http://www.alslinks.com/ (“Al’s ALS Links”)
Alfred Butler’s Web Site: http://www.albutler.com/
Alfred Caffiero’s Web Site: http://www.alfredcaffierofoundation.org/ (“Alfred Caffiero Foundation”)
Angelo Sciulli’s Web Site: http://www.scnature.com

Bert Woodard’s Home Page: http://www.siteone.com/health/woodard/ (“An ALS Manual”)
Bill Quinn Jr.’s Web Site: http://www.alstasteoffame.com/ (“ALS Taste of Fame”)
Brenda Cupelli’s Home Page: http://www.geocities.com/story_als/ (“A Story Of Spirit”)
Brent Fendley’s Home Page: http://members.tripod.com/brentsplace/ (“Brent’s Place”)

Cheryl Mathews-Prock’s Web Site: http://alsnetwork.com/ (“ALS Network”)
Chuck Hollenbach’s Home Page: http://members.aol.com/alspinpoint/index.html (“ALS PINpoint”)
Claire Culver’s Web Site: http://www.alssupport.org/ (“The ALS Support Network of Appalachia”)
Connie Zol’s Home Page: http://members.aol.com/zol588/
Craig Samples’ Home Page: http://members.aol.com/jcsam3/ (“Craig’s Place In Cyber Space”)

David Abell’s Home Page: http://hometown.aol.com/abe11/Davesindex.html
David Huff’s Home Page: http://communities.msn.com/PALSPeoplewithALS
Dean Chioles’ Home Page: http://www.shoptown.com/dean/Default.htm
Debbie Tope’s Web Site: http://www.focusonals.com/ (“Focus On ALS”)
Deliamc’s Home Page: http://www.geocities.com/HotSprings/2130/
Desmond Schulemann’s Home Page: http://www.fascinatinglife.com/ajournal.html (“An ALS Journal”)
Diane Huberty’s Home Page: http://home.att.net/~liveletdie5/ALS/ (“Nursing Tips for Living with ALS”)
Don Moore’s Home Page: http://members.aol.com/pjungles/PjunglesBegin.html
Donna Bohm’s Web Site: http://www.donnasjourneywithals.com/ (“Donna’s Journey With ALS”)
Doug Eshleman’s Web Site: http://www.lougehrigsdisease.net/ (“ALS Survival Guide”)
Doug Jacobson’s Home Page: http://home.earthlink.net/~jakesan/ (“Doug’s Beat ALS”)
Doug Satterlund’s Home Page: http://www.geocities.com/satterlu/

Edward Holmes’ Home Page: http://artists.mp3s.com/artists/129/james_edward_holmes.html?lang=eng

Gary Nicklas’ Home Page: http://www.netset.com/~gnicklas/
George Breedloves’ Home Page: http://home.rochester.rr.com/breedlove/george/index.htm
Grant Nicholas’ Web Site: http://www.glnicholas.com/ (“ALS Digest” Archives)
Greg Hicok’s Home Page: http://hometown.aol.com/palsfl41/home.htm (“Ride Across Michigan”)

Heidi Vance’s Web Site: http://www.als-curtisvancefoundation.org/ (“Curtis R. Vance Foundation”)
Henry Billen’s Web Site: http://www.nick-billen-alslougehrigsdisease-foundation.org/
Holly Hufmeyer’s Home Page: http://members.aol.com/HollyHoffy/

Irene Poindexter’s Home Page: http://home.earthlink.net/~irenepoindexter/

Jason Becker’s Web Site: http://www.jasonbecker.com/
Jason Davis’ Web Site: http://www.death-dying.com/jason/ (“Jason’s Story”)
Jeff Pines’ Home Page: http://www.enteract.com/~jmp/index.html
Jerry Bergen’s Home Page: http://www.geocities.com/HotSprings/Falls/9451/ OR
http://www.55jer.com/home.htm
Joan Diez’s Home Page: http://www.geocities.com/SoHo/Opening/9238/
Joe Harris’ Web Site: http://www.joesalsadvocacy.com/ (“Joe’s Advocacy For PALS”)
John McDaniel’s Home Page: http://johnztown.tripod.com/johnstown/ (“John’s Town”)
Jon Phillips’s Home Page: http://members.aol.com/jphill1492/page/index.htm
Joyce Edelstein’s Web Site: http://www.helpjoycelive.com/ (“Help Joyce Live”)
Judy Repass’ Home Page: http://members.aol.com/mrsre/index.html

Karl Boyken’s Home Page: http://www.avalon.net/~kboyken/als.html (“ALS Information”)
Katherine Stickney-Klaus’s Home Page: http://www.geocities.com/HotSprings/4340/ (“Picturesque PALS”)
Ken Stone’s Home Page: http://www.geocities.com/Heartland/Plains/1641/
Kenny Fullington’s Home Page: http://members.tripod.com/~kendeb/ (“The Life of a Firefighter”)
Kyle Hahn’s Web Site: http://www.kylehahn.com/ (“ALS Infobahn”)

Lane Jolliff’s Web Site: http://www.ljolliff.com (“Lanie’s Place”)
Leroy Kramer’s Home Page: http://home.pacbell.net/ranger-1/
Luther Conant’s Web Site: http://www.lutheroutloud.com/

Marcy Payne’s Web Site: http://www.everydayisprecious.com (“Everyday Is Precious”)
Mark Reiman’s Web Site: http://www.incrediblepeople.com/ (“Incredible People Magazine”)
Michael Zaslow’s Web Site: http://www.michaelzaslow.com/ (“Michael Zaslow’s ZazAngels”)
Michele Cornell’s Web Site: http://www.meetmyfriend.com/ (“Meet My Friend”)
Mikki Lawson’s Web Site: http://www.alstalk.org/ (“ALS Talk…”)

Paul Vineburg’s Home Page: http://www.users.bigpond.com/paulfran/Contents.htm (“Paul’s MND Pages”)

Richard Caughie’s Home Page: http://pweb.netcom.com/~rcaughie/pages/als_home_page.htm
Rick Clark’s Home Page: http://home.earthlink.net/~clark524/ (“Rick Clark’s World”)
Robb Thompson’s Home Page:
http://www.voiceforjoanie.org/homepages/thompson/thompson.html (“ALS Informer”)
Ron Crane’s Family Home Page: http://pta6000.pld.com/cranefam/ (“A Spiritual Resource”)
Ronnie Love’s Home Page: http://members.aol.com/Tlove607/index1.html (“Ron’s Place”)
Rose McKinley’s Web Pages: http://rosemck1.tripod.com/index-2.html OR
http://rosemck1.tripod.com/als.html

Sherry Ketzbeau’s Home Page: http://lindenwoods.tripod.com/index.html (“Lindenwood Acres”)
Steve Fowler’s Web Site: http://www.emdbd.com/stevefowler/
Steve Hutchins’ Home Page: http://www.angelfire.com/oh3/koolhutch/
Steve Weekes’ Home Page: http://www.geocities.com/sweekes99/ALStitle.html (“ALS & Associated Web Sites")
Steven Graham’s Home Page: http://members.tripod.com/~StevenGraham/

Tony Fuselier’s Home Page: http://www.geocities.com/tbear777000/index.html (“Tbear: Hunting ALS”)

Wayne Phillips’ Web Site: http://tpals.org/ (“Turning Points In ALS”)
William Kibbie’s Web Site: http://alsisnotfatal.com/ (“ALS Is Not Fatal”)


International PALS / CALS Personal Web Sites:

(Listed Alphabetically by Country)
Christine Magee’s Home Page: http://homepages.ihug.com.au/~magees/ (“Small’s Getaway” – Australia)
David Mackenzie’s Web Site: http://www.comingtolife.biz/ (Australia)
Jackie Williams’ Home Page: http://55jer.com/jackies%20page.htm (Birchip, Victoria, Australia)
John Graham’s Home Page: http://au.geocities.com/grahamjnjt/ (Sydney, Australia)
Keith Sunbeam’s Home Page: http://www.petrie.hotkey.net.au/~sunbeams/ (Australia)
Margit’s Internet Corner: http://mic.iinet.net.au (“Tools for the Motor Disabled” – Australia)
Robin Balsdon’s Home Page: http://www.users.bigpond.com/rbalsdon/index.html (“Enjoying Life” - Australia)
Stephen ("Mutley") Brown’s Home Page: http://members.tripod.com/~MNDMutley/index.html (Australia)
Steven Shackel’s Web Site: http://www.goulburn.net.au/~shack/ (Goulburn, Australia)

Irene Coutinho’s Home Page: http://www.webspace.com.br/acm/ (Brazil)

Chris Mann’s Home Page: http://ranger03.com/ALS.html (Calgary, Alberta, Canada)
George Goodwin’s Web Site: http://www.alsindependence.com/ (“ALS Independence” – Ontario, Canada)
Roger Poulin’s Home Page: http://pages.infinit.net/gagnonr/ (Quebec, Canada)

Birger Bergmann Jeppesen’s Home Page: http://home5.inet.tele.dk/bbj/als.htm (Odense, Denmark)
Jens Harhoff’s Home Page: http://home19.inet.tele.dk/joh_als/ (Denmark)
Tommy Pedersen’s Web Site: http://www.als-gruppen-vestjylland.dk/ (Denmark)

Jeannie Harrison’s Home Page:
http://uk.geocities.com/jeannie_25als@btinternet.com/ (“Jeannie’s Place” – England)

Jean-Marie Quiquempois’ Home Page: http://www.geocities.com/BourbonStreet/Delta/3573/ (France)

Renate Winke’s Home Page: http://pweb.de.uu.net/winke.ki/ (Germany)

Steve Killeen’s Home Page: http://www.iol.ie/~killeen/stevemnd/stevehom.htm (“IMNDA” – Ireland)

[BobbyB]

Moshe Zeevi’s Home Page: http://www.als-mnd-zeevi60minutesfilm.net/ (Israel)

Hitosi Nisio’s Home Page: http://www.horae.dti.ne.jp/~hnals/ALSweb/ (Japan)
Kaznao Mimaki’s Home Page: http://www2.ocn.ne.jp/~kazm/ (Japan)
Takeshi-Kamata’s Home Page: http://www.isn.ne.jp/~kamata/english/index.html (Japan)

Jeanet Vlist Kroft’s Home Page: http://home01.wxs.nl/~vlist008/frameset.html (Netherlands)

Aase Samsonsen’s Home Page: http://home.online.no/~aasamson/index.htm (Norway)
Per-Ivar Pettersen’s Home Page: http://www.sasdx.com (Norway)

Billy Currie’s Home Page: http://homepage.dtn.ntl.com/william.currie1/ (Glasgow, Scotland)
John Patterson’s Web Site: http://www.dochasfund.com/ (“The Dochas Fund” – Scotland)

Javier Ruiz Gimenez’s Home Page: http://bbs.seker.es/~adela (“ADELA” – Spain)

Rob Marshall’s Home Page:
http://homepage.ntlworld.com/rob.shaz/ (“Rob & Shaz’s Place” – Nottinghamshire, U.K.)



The following group of PALS / CALS Web Sites were in existence at one time, but now are
no longer valid. If you have any updated information on the following Web Sites, please
E-mail me at: sweekes99@yahoo.com

(Listed Alphabetically)
**ALS Trail Guide: http://pages.prodigy.net/dnd/ (Invalid)
**Barbara Keenan’s Home Page: http://homepages.which.net/~b.keenan/.html (Invalid)
**Bob Lee’s Web Site: http://aridewithareason.org/ (“A Ride With A Reason” – Invalid)
**Bob Perron’s Home Page: http://www.idir.net/~rlperron/als.htm (“ALS Magazine” – Invalid)
**Brent Dewar’s Home Page: http://www.cadvision.com/bdewar/ (Invalid)
**Dr. Charles Deevers’ Home Page: http://www.lifevictories.com/deevers/ (Invalid)
**Chris Davis’ Home Page: http://www.sfo.com/~hulaman/als.html (Invalid)
**Dave Mace’s Home Page: http://community-2.webtv.net/jdcane/MyHomePage/ (Invalid)
**David Mackenzie’s Home Page: http://www.iniaccess.net.au/~davidmac/ (Invalid)
**Deanna Hammond’s Web Site: http://www.beading4als.com/szw (“Beading 4 ALS” – Invalid)
**Diana’s Home Page: http://www.geocities.com/RainForest/2055/index.html (Invalid)
**Don Altier’s Home Page: http://home.earthlink.net/~alsfighter/index.html (Invalid)
**Jack Norton’s Home Page: http://pages.prodigy.com/ALSPROD/ (“ALS Advocacy” – Invalid)
(Note: Jack lost his battle with ALS in 1997)
**Jean Green’s Home Page: http://www.geocities.com/teamals/index.htm (“Team ALS” – Invalid)
(Note: Jean’s husband, Dave, lost his battle with ALS in July of 2002)
**Jim Compton’s Home Page: http://faculty-staff.ou.edu/C/Jimmie.D.Compton-1/ (Invalid)
**Jim Ritton’s Home Page: http://www.borg.com/~nlf/als/ (Invalid)
**Joe’s Home Page: http://www.homestead.com/joseph20000/front.html (Invalid)
**John McMullen’s Home Page: http://www.mindspring.com/~jmcmulln/als.html (Invalid)
**John Paterson’s Home Page: http://users.colloquium.co.uk/~ktravers/home_1.html (Invalid)
**Larry Carlson’s Home Page: http://home.talkcity.com/WorkoutPl/sunshines23/ (Invalid)
Pam’s Page: http://www0.delphi.com/family/pamals.html (Invalid)
Pam Carlson: http://members.delphi.com/pscarlson (Invalid)
**Leonard (Lenny) Brunner’s Home Page: http://home.talkcity.com/KarmaWay/leo-11/ (Invalid)
(Note: Lenny lost his battle with ALS on September 20, 2002)
Vicki’s Tribute to Lenny: http://expage.com/page/vickiscorner (Invalid)
**Lou Gehrig Tribute: http://msnhomepages.talkcity.com/StudentUnion/phenemoe/index1.html (Invalid)
**Marc Levison’s Home Page: http://home.talkcity.com/beanieblvd/ml60/ (Invalid)
**Marc Reynolds’ Home Page: http://www.execulink.com/~rreynold/ (Invalid)
**Marion Lippert’s Web Site: http://www.ldeem.com/ (Invalid)
**Mark Baird’s Home Page: http://www.cadvision.com/mbaird/ (Calgary, Alberta, Canada – Invalid)
(Note: Mark lost his battle with ALS in March of 2003)
**Merv Vindy’s Home Page: http://expage.com/THEmeger (Invalid)
**Mingo Montellano’s Home Page: http://home.talkcity.com/CarpoolLn/mingo4/index-3.html (Invalid)
**Paul’s Home Page: http://msnhomepages.talkcity.com/SupportSt/shimbleshanks/ (Invalid)
**Paul Johnson’s Home Page: http://home.earthlink.net/~alsalert/index.html (“ALS Alert” – Invalid)
(Note: Paul lost his battle with Lung Cancer on July 24, 2002)
**Richard Gelinas’ Home Page: http://home1.gte.net/cappanut/index.htm (Invalid)
**Robyn Bunce’s Web Site: http://www.robynsrace.com/Page_1x.htm (“Robyn’s Race 4 ALS” – Invalid)
**Roy Smith’s Home Page: http://www.iinet.com/users/royden/ (“The Mercury Connection” – Invalid)
**Russ Gamble’s Home Page: http://home.earthlink.net/~russgamble/ (“Lean On Jesus” – Invalid)
**Scott Dawson’s Home Page: http://www.interlog.com/~srdawson/alsintro.htm (Invalid)
**Stan Smith’s Home Page: http://www.scv.net/~stan/ (Invalid)
**Steve Holly’s Web Site: http://www.als-mnd.com OR (Invalid)
http://www.steveholly.com/ (Invalid)
(Note: Steve shutdown his Web Site in June of 2002 due to lack of funding)
**Sue Tufty’s Home Page: http://www.gothweb.co.uk/Tufty (Invalid)
**Tim Hawkins’ Home Page: http://timhawkins.homestead.com/untitled1.html (Invalid)
**Tom Brooks’ Web Site: http://www.tlbrooks.com/ (Invalid)
(Note: Tom lost his battle with ALS in July of 2004)


Eric Edney does not have a website yet, but he has managed to control the symptoms of his ALS.
For information about his progress and regimen you can E-mail him at:
GREDNEY@aol.com

Peter Ganzel’s Home Page – “A Potential Cause of ALS”
http://members.aol.com/pganzel/my.html
"A Potential Cause of ALS” by Peter Ganzel is worth reading.
Some of the ideas may initially appear unorthodox, but the article is well presented and
the results achieved by Peter are extremely impressive.
The E-mail address for Peter is:
Pganzel@aol.com


Compiled By: Steve Weekes ( sweekes99@yahoo.com )
http://www.geocities.com/sweekes99/ALS6.html

[BobbyB]

the Vietnam era in music
http://chu65nang67.us/nam/vietnam.html

like it say's travel back in time
click on a playlist



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http://homepage.mac.com/jakesan/DHP/page8/page15/files/page15_6.gif
http://www.wfnals.org/

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Seats Incorporated
A World Class Leader in Seating Products
http://www.seatsinc.com/ngp/!slmenu_template.main
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http://www.clinicaltrials.gov/html/images/ctgov_logo_ttl.gif
http://www.clinicaltrials.gov/ct/action/GetStudy
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Clinton Foundation
http://www.clintonfoundation.org/index.htm

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http://www.kylehahn.com/Media/Gif/scrollbanner.gif

[BobbyB]

http://www.rollxvans.com/images/04vans.jpg
http://www.rollxvans.com/newvans.htm

Minivans are our most-popular seller. Compact, sporty and efficient. Easy to maneuver and fun to drive. At the press of a button your door slides open, a ramp is smoothly deployed, and the van gently lowers to make for the easiest possible access for scooter and wheelchair users. Rollx allows drivers the ability to roll in behind the steering wheel, automatically secure the wheelchair and drive away.


Full-size Vans are roomy, luxurious and outfitted with state of the art equipment. The touring must-have for larger needs. Stylish conversions allow for flexibility and total mobility for driver or passenger. Our lowered floors or raised roofs give ample headroom and visibility in center, driver and passenger positions. We offer most major brand wheelchair lifts, adaptive equipment and recommend the best product for your specific needs

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Possible Areas Affected
1. Arm muscle
2. Tongue
3. UPPER MOTOR NEURONES
4. BRAINSTEM (BULBAR) LOWER MOTOR NEURONES
5. Axon bundles (nerves)
6. Rib muscles involved in breathing
7. SPINAL LOWER MOTOR NEURONS
8. Leg muscle

[BobbyB]

Products: Wheelchairs, Scooters and Components
http://www.wheelchairnet.org/WCN_ProdServ/Products/mobility.html

Wheelchair and Seating Evaluations
http://www.wheelchairnet.org/WCN_ProdServ/Consumers/evaluation.html

Products: Wheelchair Access Products
http://www.wheelchairnet.org/WCN_ProdServ/Products/access.html

http://www.daessy.com/dms/images/display.jpgwww.daessy.com/dms/indexm.html

Products: Assistive Technology Devices
http://www.wheelchairnet.org/WCN_ProdServ/Products/OtherATprod.html

//////////////////////////////////////////////////////////////////////



http://www.alswarriorpoet.com/NewCard06b.jpg
http://www.alswarriorpoet.com/
/////////////////////////////////////////////////////////////////////////


QUEST PRODUCTS & SERVICES
Access EZ Lift www.ezliftaccess.com
Advanstar Communications www.abilitiesexpo.com
Altimate Medical
www.easystand.com
AMS Vans www.amsvans.com
Assistive Technology Industry Association www.atia.org
Automobility www.handcontrolscorp.com
Canes Galore www.canesgalore.com
Caraleasing www.caraleasing.com
Chattervox (Asyst Communications) www.chattervox.com
Clark Medical www.clarkmedical.com
Clean Butt www.cleanbutt.com
Clever Products www.ez-doesit.net
Convaid www.convaid.com
Daimler Chrysler dc-automobility.com
Deming Designs www.beachwheelchair.com
Disabled Dealer www.disableddealer.com
DS Medical/CCS Medical www.libertypouch.us
Duralife www.duralife-usa.com
Dynavox Systems www.dynavoxsys.com
Easy Mobility www.easymobilityco.com
Endless Pools www.endlesspools.com
Ford www.mobilitymotoringprogram.com
Freedom Motors www.freedommotors.com
Healthy Life and Times www.healthylifeandtimes.com
Hertz Supply www.hertzsupply.com
Independent Tool Solutions www.pocketdresser.com
Innovation In Motion (Vestil) www.vestil.com/wc
In Touch Systems www.magicwandkeyboard.com
Island Dolphin Care www.islanddolphincare.org
J.H. Emerson www.jhemerson.com
Johnson & Johnson iBOT www.indepencenow.com/ibot
Kantor & Kantor, LLP www.kantorlaw.net
Liberty Motor Co. www.libertymotorco.com
LiftVest USA www.liftvest.com
Loveseatz www.loveseatz.com
Mobility Independent Transportation Systems, Inc. www.wheelchair-van.com
Mobility Research litegait.com
Natural Access www.landeez.com
NMEDA www.nmeda.org
NuProdx www.nuprodx.com
Open Sesame www.opensesamedoor.com
Permobil www.permobil.com
Prairie View www.pviramps.com/index.php
R.D. Equipment www.rdequipment.com
Rand-Scot www.randscot.com
Redbarn www.redbarn-enter.com
Redman www.redmanpowerchair.com
Roll-A-Ramp www.rollaramp.com
Rollx Vans www.rollxvans.com
Showerbuddy www.sisusonline.com/quest
Special Needs Alliance www.specialneedsalliance.com
Stand Aid of Iowa www.stand-aid.com
SureHands www.surehands.com
Thomas Fetterman www.fetterman-crutches.com
Touch Turner www.touchturner.com
Viewpoint Mobility www.viewpointmobility.com
Wheelchair Getaways www.wheelchairgetaways.com
Words+ www.words-plus.com
X-Strap www.x-strap.com

[BobbyB]

http://www.lownav.com/graphics/LNDidotBanner.gif

http://www.lownav.com/graphics/LN_Homepage06.jpg
Eric Lowen and Dan Navarro,

listen to them.
http://www.myspace.com/lownav
http://i.rollingstone.com/assets/rs/41/6165/images/47503_thumb.jpg
website
http://www.lownav.com/index.html
http://www.lownav.com/perfsong.html


https://secure2.convio.net/alsa/images/content/pagebuilder/45335.jpg
https://secure2.convio.net/alsa/site/Donation?ACTION=SHOW_DONATION_OPTIONS&CAMPAIGN_ID=3661&JServSessionIdr010=88wupqnx51.app24b

Musical Duo Sees Opportunities in Working with ALSA
By Stephanie Dufner, ALSA Communications Coordinator
The performers and recording artists Lowen and Navarro, who held a web cast concert that benefited ALSA’s Greater Los Angeles Chapter in April 2004 after one of the group’s performers Eric Lowen was diagnosed with ALS, are doing more to help ALSA.

http://www.alsa.org/images/cms/Exchange/Lowen%20and%20Navarro.JPG

During their recent visit to the National Office of ALSA, (right) Eric Lowen and Dan Navarro (aka Lowen and Navarro) discussed how Lowen’s ALS has affected their personal and professional lives.

During their touring schedule, which runs through July 2006, the musical duo encourages ALSA chapters to host information tables in venues where the band will hold concerts. “It feels very fitting to be able to talk about it (ALS) on stage and have somebody out in the lobby to answer the questions that are going to come up,“ Lowen said. “I really like that.”

The web cast raised nearly $8,000, including $5,200 from the sale of a $50 DVD set. Fans across the country and around the world viewed the live web cast where the two singer-songwriters reunited with members of their original band with whom they had not played in 12 years. To date, the event has raised almost $13,000.

“We wanted to do something directly for the L.A. Chapter because they were directly helping me,” explained Lowen, of the neo-folk band.

Through the Greater Los Angeles Chapter, Lowen has had access to a scooter and a scooter lift, a walker and a wheelchair. A tall musician with long flaxen hair, he has worked with case manager Pedro Loza at the chapter; Loza gave the singer-songwriter the phone number of the chapter’s executive director, Fred Fisher.

“The chapter has a tradition of engaging families in the fight against ALS,” Fisher said. “Each family finds their own way to participate, make an important difference. Dan (Navarro) and Eric use their musical talent to increase awareness and raise funds to support the chapter’s patient services programs as well as search for a cure.”

Lowen and Navarro have played in more than 90 cities internationally during the past 16 years; some locations have included Washington, D.C; Minneapolis; Chicago; Oslo; Stockholm; and Cannes, France.

Recently, Lowen and Preston Sturges penned a song titled, Learning to Fall, a tune that explores Lowen’s reactions to having the disease. The song appears on an album the band will release.

Lowen believes that his diagnosis has affected his working on stage in front of live audiences. “I feel more of immediacy when I’m performing. I feel more of an emotional connection.” He uses a walker when he’s on stage, and their road manager must carry him up steps to the stage.

Navarro agreed with Lowen’s assessment about his performance abilities. “Guitar playing has deepened with Eric. He’s coming from a more spiritual place in terms of what he’s doing.”

To read Lowen and Navarro’s concert schedule through 2006, visit http://www.lownav.com/shows/index.html.

To purchase the band’s DVD that benefits the Greater Los Angeles Chapter, e-mail one of the following addresses: tonya@alsla.org or gretchen@alsla.org. Note you would like to order Lowen & Navarro’s – Live at Kulak’s Woodshed.




Upcoming Shows
For Eric Lowen and Dan Navarro, the road is home, the stage is the runway and the studio the garden. Songs of loss and change, hope and acceptance, fear and deliverance color their six studio albums. Voices locked in synchro-step weaving in and out of the flow, telling stories of real lives in the balance. The connections between singer and song, between audience and stage melt into a rich brew that brings them deeper into the heart of the matter and that much closer to the fire in the hearts of their people. There is no road too long that their people don't travel far and wide to see and hear them. As it has been for nearly twenty years, it still is today.
website
http://www.lownav.com/index.html

Life has a way of turning on a dime and a matter of a few hours or a few days or even a few minutes everything can seemingly come unglued. On March 17th, 2004, I was diagnosed with Amytrophic Lateral Sclerosis or more popularly “Lou Gehrig’s Disease”.
From the June, 2006 issue of Performing Songwriter Magazine

Survival, Success and the End Of The Road
by Eric Lowen

I count myself among the lucky ones. Although my partner Dan Navarro and I have never had the kind of across-the-board success we may have hoped for when we started out, we have made our livings at music for a long, long time. We finally got an opportunity to make our own record in 1990 after a few years of having some success as songwriters and many more years before that of laboring away in nearly total obscurity. It was the chance of a lifetime and we were pretty convinced that it was going to be “once in a lifetime”. The fact that it turned out not to be so and that we would go on to make many more records and tour for the last 16 years, still leaves me black and blue from pinching myself. We are journeymen, working hard for a relatively small return, but it has been the most satisfying and rewarding experience I could ever hope for. We have, through luck and persistence and a commitment to our long-running motto, “we try not to suck”, connected with a remarkable group of fans and friends who have kept come to see us, bought our records. and supported us in every way. If they are to be believed, we have made a difference to many of them through proposals, marriages, divorces, child rearing and even the loss of a child. That is a kind of success that would have been hard for me to imagine, but has been ultimately so much more meaningful than all the money we never made.

Life has a way of turning on a dime and a matter of a few hours or a few days or even a few minutes everything can seemingly come unglued. On March 17th, 2004, I was diagnosed with Amytrophic Lateral Sclerosis or more popularly “Lou Gehrig’s Disease”. ALS is a neuro-muscular disease involving the brain cells that control the voluntary muscles. The brain cells die, the muscles atrophy and you are left paralyzed with very little or no muscle control in a matter of months or a few years. Stephen Hawking, the famous physicist is a well known survivor of the effects of the disease, having been diagnosed in 1964. He is the longest known survivor, but he has assisted speech, a ventilator for breathing and a feeding tube. In my mind, I saw the familiar image of him hunched over in his powered wheelchair when the doctor gave me my diagnosis on that St. Patrick's Day morning.

It had only been the day before that I had returned from Northern Virginia where Dan and I were recording our ninth Lowen & Navarro record. We were working with a great cast of musicians and a fine producer, John Whynot, and the creative juices were flowing. The studio was up a flight of stairs which already was quite difficult for me to climb, but is is a far cry from where I am now, barely able to take a few small steps while holding on to something. During the sessions we had recorded a song by Dave Moore called, “All the Time In the World”. It was rare for us to record a song we did not write, but it was for a planned future record of all cover tunes and besides, the meaning of the song hit me very hard because for about a year I had noticed changes in my body and I knew that something was horribly wrong. During the rest of the recording, my sickness became the “600 pound gorilla” hanging over us.

For me it was a time of decisions and some confusion about how to proceed with my life. I was engaged to be married and the family that was going to be created would include five ten year olds (her triplets, my twins, three days apart). There was a school of thought that I should immediately quit my nutty job as singer-songwriter touring musician. There were also some questions directed at my wife in the nature of “ are you still going to get married?” Well, she did still marry me, I have lots of 12 year olds now AND I kept my crazy job in spite of becoming disabled. It became really obvious to me that what I have spent my life doing is much more than just a job, it’s more of a “calling” as my clergyman father would have referred to it. Music has huge elements of something magical in it and it has the power to reach people in ways that nothing else can. I don’t want to paint it that I have continued out of some sense of responsibility to the audience, although I do feel one, I want to do what I am doing, and in the twenty-odd years I have been pursuing it, it has become a large part of who I am. My partnership with Dan Navarro has been a very long one too and with the many musicians and writers we collaborate with. They make up a musical community that has been a huge support for me through these tough times.

What has happened for me is that the experience of being a performer and a songwriter has deepened in ways I could never have foreseen. Dan and I have always tried to make sure that we wrote about issues that mattered to us. In some cases it may have hurt us (on one release we had not one, but two songs with the word “middle-aged” in them . . . not a wise move for getting radio play). We have written plenty about relationships and growing up. While that never got us a mainstream audience it did resonate with the amazingly loyal fans we did connect with. Now I have a new sort of viewpoint to add with the addition of a serious illness. I have written a few songs that deal with it directly, but what strikes me is that the things I am facing and the lessons I am learning really apply to all of us, we all face inevitable physical decline at some point and of course we all die. A dear friend of mine gave me a good perspective on it at the time of my diagnosis when she said “ we are all on a journey. . . you just have a better map.”

A songwriter named Michael Smotherman once told me “in this business, survival is success.” I have survived and I actually feel successful, although some might not agree if they checked my tax returns. Now I am facing the end of all that in the uncertain future dictated by a serious illness. Eventually, I will no longer be able to make my guitar speak, that friend who got me through puberty and still comforts me today. Finally my voice will be mute as the disease takes its inevitable course. That will be harder than I can express, and I am sure that well before then, I will have had to stop flying around the country doing gigs. Right now though, I am thrilled to still be able to do what I truly love and feel I was born to do. I am able to educate audiences about ALS and still able to make a connection that matters, both to me and hopefully to them. If there is distaste on their part watching me be hoisted on the stage and placed in a chair, they don’t show it. They don’t even mind that my fingers can’t do all they once did on the fingerboard, what seems to matter is tht the music is still doing the magic that music does and that the connection still happens.

This job is not a chosen one, it chooses one. It has never been easy and it is getting harder now, but I would never trade the experience for anything. The mysterious and magical thrill of writing a song, the charge of being in front of an audience, and also the exhilaration of speaking in the language of music with other musicians. It will end for me, but the songs will go on and the memories are mine forever. I think I really understand what Lou Gehrig meant in his famous retirement speech when he said, “Today I feel like the luckiest man on the face of the earth.”

[BobbyB]

Kyle Thompson
About "FROM THE FIELDS"

It started with GLORY ROAD. I had just finished reading Bruce Catton’s civil war trilogy and was so inspired by his poetic imagery and ability to tell the history of the war in short order that I penned GLORY ROAD. The song is a thumb print, a boot mark in the mud, a button off a long moldered uniform, left behind by the Army of the Potomac and the Army of Northern Virginia and it sings of the carnage left in the wake from the clashes between the two.

Around the same time that I wrote GLORY ROAD, I began to experience what were the emerging symptoms of ALS, also known as Lou Gehrig’s disease, a debilitating and fatal disease with no known cause or cure. I was told to get my affairs in order and make the most of whatever time I had left. Most people with the disease don’t survive more than 5 years after being diagnosed. So, that being the case, I decided to go see the places I had always wanted to see, and being a civil war buff, this naturally included battlefields galore.



"From The Fields."
Kyle Thompson:

http://www.kylethompsonmusic.com/images/kyleatappomattox.jpg
Welcome! And thank you for visiting my web site. I am currently featuring the songs, music and liner notes from my 2005 CD "From The Fields." The music was recorded on Civil War Battlefields from Mississippi to Pennsylvainia and is dedicated to the protection and preservation of those hallowed places and to those who fought and died in the War Between The States. Please use the links I have provided to purchase a copy of "From The Fields" or to download the music to your computer,ipod or MP3 player. Please take time to sign the guest book and come back again for news and updates...
http://www.kylethompsonmusic.com/home.html

Kyle & Traci Thompson....finish line 2003 LA Marathon...pushed 26 miles in a wheelchair by friends to raise awareness about ALS.
http://www.kylethompsonmusic.com/images/marathonfinishkyletraci.jpg

please check out kyle's photo page.
http://www.kylethompsonmusic.com/photos.html

http://www.kylethompsonmusic.com/home.html

http://www.kylethompsonmusic.com/images/shilohbattlefield.jpg

[Bryan1004]

http://geocities.com/bryan_osburn/als_challenge.html

Bobby,
Great list of websites to visit.

[firemonkey]

http://www.doaj.org/

[BobbyB]

http://homepage.ntlworld.com/peter.charman1/images/header.gif

http://homepage.ntlworld.com/peter.charman1/images/homeshot.jpg
Peter Charman

website link
http://www.bluepete.co.uk/

l now have a website not yet finished yet to have a visitors' book. You can hear me singing and playing blues harp.

http://www.bluepete.co.uk/

Its more a celebration of life than anything else.
_________________
It's not the years in your life that count. It's the life in your years.

http://www.magimedia.co.uk/buildforum/images/avatars/10458585174469e04a39fec.jpg

Build-UK Chat Forums
Committed to providing a site that is safe for everyone affected by motor neurone disease (MND).
http://www.magimedia.co.uk/buildforum/viewforum.php?f=1&sid=3b60c458ef77eb56472f2b25b2148671

[BobbyB]

Posted: Thu Nov 30, 2006 11:31 am Post subject: Guest Book

--------------------------------------------------------------------------------

If some of you could visit my website http://www.bluepete.co.uk/ and sign into guest Book i would be so grateful now i have one. I am also thinking of selling cd of my music, all proceeds would go to mnd research, although i will have to get permission from other band members first.
_________________
It's not the years in your life that count. It's the life in your years.

[BobbyB]

http://girlskickals.org/images/banner.jpg
http://girlskickals.org/index.html

[wallyw1]

The first link is to a chapter in a book entitled Mind Games written by Dr. Thomas S. French who was an ALS patient. It is thoughtful and inspiring. The second link is to a site about the film made about his life which is also inspiring and helpful too.

http://www.focusonethics.com/media/Chapter%2028.pdf

http://www.longshotproductions.org/mindgames.html

[Pepperlilly]

Hello:

I was hoping to add my friend's website www.cureals.ca which tells her story and is selling beautiful crystal bracelets to support research at the Sunnybrook ALS/neuromuscular Clinic in Toronto, Ontario, Canada.
These bracelets are so beautiful and are a reminder of all of our loved ones who are and have suffered from ALS. They have the symbol of "hope" on them to remind us that there is hope. You can see a picture of the bracelet and see how you can order one on www.cureals.ca.

Thank you

Pepperlilly:)

[BobbyB]

mice on drugs
http://learn.genetics.utah.edu/units/addiction/drugs/mouse.cfm

[BobbyB]

Canes To Wheelchairs: Considering Mobility Devices
http://www.usatechguide.org/blog/canes-to-wheelchairs-considering-mobility-devices/#

http://www.usatechguide.org/images/hand.jpg

[BobbyB]

Dreams Don't Die
http://www.dreamsdontdie.org/

http://www.dreamsdontdie.org/templates/socio_plazza/images/logo.gif

[BobbyB]

http://www.carolinasals.org/images/banner_logo.gifhttp://www.carolinasals.org/images/banner_pic.jpg

http://www.carolinasals.org/images/puzzle.gif

http://www.carolinasals.org/index2.asp

[BobbyB]

ModelTalker Speech Synthesis System
http://www.modeltalker.com/mt.php


The ModelTalker Speech Synthesis System is a revolutionary software package designed to benefit people who are losing or who have already lost their ability to speak. It allows people with ALS or other conditions to use a synthetic version of their own voice for communication, or to choose a voice best suited to represent them.

The system uses representative segments of recorded speech (either from an individual who is losing the ability to speak or from a person chosen by someone who can no longer speak) to create a unique synthetic voice. This synthetic voice is virtually unlimited, meaning it can be used to express almost anything, including words and phrases not previously recorded. The voice "banking" process is guided by InvTool, our computer-assisted voice recording software. Once this process is finished, an individual will be able to create a synthetic voice by uploading their recordings to an automated voice generation site. The voice, when combined with our ModelTalker speech engine, can then be used with any communication system that is SAPI 5.0 compatible.

To illustrate the potential of this software, below is an interactive text-to-speech form that will demonstrate ModelTalker when used with a professionally recorded and edited female voice.



Please type in some sample text: hello bobby



Here are some additional samples from synthetic voices that have been created by the current beta version of ModelTalker. These synthetic voices were automatically generated from recordings in home or office environments with inexpensive microphones and sound cards. No human editing of the original speech waveforms was done.

Sample 1 (female)
Sample 2 (male)
Sample 3 (male)
Sample 4 (female)

Currently, the complete ModelTalker System is in the early stages of commercial development and we are actively seeking beta testers. If you are interested in participating, please contact us.

[BobbyB]

http://www.als.net/images/ALSTDI%20Logo%20block%20I.gif

Spring 2007 Newletter Online Now

5/22/2007


You can read this quarter's newsletter online by clicking on or pasting the following link in your browser: http://www.als.net/aboutus/newsletters/spring2007.pdf

[BobbyB]

Purchase Mike Bougher Paintings for $75 to Benefit the ALSA


I am now selling archival, signed (fingerprinted), giclee prints of my
paintings <http://mikebougher.com/purchase_giclee_prints.htm> for $75
each. Every penny goes to the ALSA to pay for research and patient
services. Please consider forwarding this message to others who may be
interested in this art opportunity that supports the ALS cause.


Thanks,
Mike Bougher

[Age: 42] [Dx: July 1998] [Bi-Pap: Nov. 1998] [WC: Aug. 1999] [24/7
Bi-Pap: Nov. 2002], [Trach/Vent/PEG: Dec. 2004] [Happy/Going Strong:
Present]

http://mikebougher.com <http://mikebougher.com>

[BobbyB]

The Team at MND Victoria
www.mnd.asn.au

Welcome to the Home Page and Web Site of the Motor Neurone Disease Association of Victoria, Australia (MNDAV).

In Australia, MND kills one person every day

[BobbyB]

http://www.nahc.org/images/header1.gif

http://www.nahc.org/


///////////////////////////////////////////////////////////////////////


http://www.independentliving.org/images/ili-logo.gif

http://www.independentliving.org/

[BobbyB]

http://www.lifetool.at/rte/upload/integramouse/im_logo_max_lowres.jpg


The IntegraMouse® is a mouse controlled by lip movements and sip and puff clicking. It is ideal for computer users with various physical challenges including total paralysis, amputees, muscular dystrophy, or multiple sclerosis.

If you have severe physical challenges using a computer is a powerful aid to independence. The computer today can offer so many benefits to the special needs user; facilitating communication and interaction, as well as providing access to a wealth of information. The computer is an empowerment tool, dramatically enhancing your quality of life.

Accessing the computer other than via a standard keyboard and mouse can present a number of problems. However the IntegraMouse® is a highly attractive solution for a large range of challenges. The IntegraMouse® is especially designed for users who are unable to operate a mouse with their hands.



http://www.lifetool.at/rte/upload/integramouse/integramouse_michael_lowres.jpg
IntegraMouse® has all the functions of a standard mouse enabling the user to control all functions of the computer by lip movements. The IntegraMouse offers a sensitive sip and puff solution that controls the range of mouse clicks (left click, right click, double click, drag&drop).

To operate, the user simply places the mouse between the lips and operates the cursor by applying pressure with the lips. Requiring as little as 0.1 mm of movement or 10g of pressure to control the mouse, the IntegraMouse enables the computer to be accessible to users with physical disabilities and limitations. Mouse-clicks are triggered by the user slightly sipping and puffing into the mouth piece.

David Hofer, director at LifeTool: „The essential advantage of IntegraMouse® is achieved through a membrane in the mouthpiece of the device which partially blocks the flow of air coming in. By breathing in and blowing out this membrane makes movements forwards and backwards. The underlying optical sensor take the movements of the membrane and change them into corresponding mouse signals.“

The IntegraMouse® differs from world-wide alternatively by several, innovative components:


certification as a medical device after the European medicine law because of high hygienic standards
registered patent
evaluated product and available in 23 countries all over the world
designed as a long life product under highest quality standards

simple installation through plug & play (USB)
no external power supply required
no drivers or installation of additional software needed
can be used by several persons by exchangeable mouthpiece
minimum physical expenditure for controlling the IntegraMouse® sufficiently
the possibility, to have a break or leave the computer without assictance
by using complementary soft & hardware the use of TV, radio, telephone, fax, email, SMS & environmental control in combination with the IntegraMouse® is possible
permanent and direct view to the screen is given
very elegant solved Design
no other attachment of control units at the body or head of the user necessarily
awarded as a innovative product in Austria, Germany, Spain, Czech Republic and Japan

http://www.lifetool.at/show_content.php?sid=218

[BobbyB]

The web's best ALS sites

May 22, 2007
You may know Amyotrophic Lateral Sclerosis (ALS) as Lou Gerhig's Disease, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. About 15 Americans are diagnosed with the disease each day. If you or someone you know is battling ALS (or if you'd like to volunteer to support the search for a cure), these sites rank among the web's best resources on the topic. Print Email ALSA.org

http://www.alsa.org

For patients, their families and anyone who wants to help battle this disease, this website serves as an indispensable learning tool and outreach directory. Fiercely dedicated to leading the fight to cure and treat ALS, the Association's high-impact accomplishments include convincing Congress to waive the 24-month waiting period for Medicare coverage for people with ALS. Its site offers advice for patients and families (with a section dedicated to veterans), archives news and public policy issues, and details research and clinical trials. Go online to join in the national Walk to D'Feet ALS or to learn about volunteer opportunities.

Print Email March of Faces

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

A grassroots organization managed and governed by ALS patients and caregivers, March of Faces is dedicated to spreading awareness about the disease. The site displays the poignant March of Faces banner, a photo display of men and women who have been stricken with ALS. The group's members use education, awareness, advocacy and fundraising events to inform the public and accelerate the search for a cure. Find free downloads of adaptive technologies like text-to-speech software, and donate to the cause via this website.

Print Email ALS Care

http://www.alscare.com

Nurse Mary Beth Geise has dedicated much of her 20-plus-year career to developing and creating better home care strategies that help ALS patients live more comfortably and productively. Patients, their families, and even drug companies have turned to her for help and expert advising on the topic of ALS care. The site is an invaluable resource, with links to other advocacy organizations and free downloads of documents and videos on care topics like methods for easing respiratory problems and coping mechanisms for caregivers. Phone consultations are available.

Print Email Project ALS

http://www.projectals.org

Patient Jenifer Estess, diagnosed with ALS at age 35, started Project ALS with help from her family in 1998. To date, the fundraising organization has raised more than $30 million, contributing 81 percent to research programs, and has encouraged scientists who were once competitors to work collaboratively toward a cure. Peruse this site for a well-organized tour of breaking news about ALS and new research, including quick blurbs and photos of the researchers supported by the Project.

Print Email Ride for Life

http://www.rideforlife.com

Established in 1998 by ALS patient Chris Pendergast, the organization's signature event, The Ride, is a 10-day tour completed by ALS patients in their electric wheelchairs to generate public awareness and raise funds for finding a cure. At least half of Ride for Life's income is donated to cure-focused research programs, while at least 40 percent is directed toward Ride's patient services. These include $1,500 grants for home care expenses and $750 grants for legal expenses, which ALS families can apply for via the site.

Print Email Les Turner Amyotrophic Lateral Sclerosis Foundation

http://www.lesturnerals.org

This Skokie-based nonprofit organization is the only Chicago-area non-profit devoted solely to the treatment and elimination of ALS. In 1986 funds from the Les Turner Foundation helped establish the Lois Insolia ALS Center, a facility at Northwestern Memorial Hospital in Chicago dedicated to the total care of people with ALS, from neurological exams to nutrition and social assistance. The site offers information about the latest research findings, as well as Chicago-area events like ALS Walk4Life and Lou Gehrig Day at Wrigley Field.

Print Email International Alliance of ALS/MND Associations

http://www.alsmndalliance.org

More than 50 patient support/advocacy groups from more than 40 countries participate in the International Alliance, founded in 1992 as a forum for the exchange of information between worldwide organizations battling ALS. Members discuss common issues like the inadequacy of health systems for dealing with this disease's demands and the challenge of attracting funds and volunteers to the cause. The Alliance has prepared and issued progressive documents such as a Baseline of Services for People Living With ALS/MND; full text of relevant documents, updated international news and contact information for ALS nonprofit organizations around the world are available on the site.

Print Email ALS Therapy Development Institute

http://www.als.net

When his brother Stephen was diagnosed with ALS in 1998, James Heywood, former director of technology development at the Neuroscience Institute, left his position to found the ALS Therapy Development Foundation, the world's first ALS-focused nonprofit biotechnology company. In January 2007, a grant from the Muscular Dystrophy Association allowed the company to partner with the MDA under a new name, ALS TDI. The Institute, based in Cambridge, Mass., is now the world's largest research program dedicated to discovering drugs to treat ALS. Related news, including research developments, nutrition findings, and public interest stories about ALS patients, is regularly posted to the website.

Print Email ALS Hope Foundation

http://www.alshopefoundation.org

The ALS Hope Foundation provides long-term support to researchers working toward a cure, clinics specializing in ALS care, support programs for patients and caregivers, and educational programs for physicians and patients. In addition to other projects, the Pennsylvania-based organization funds research and education at the MDA/ALS Center of Hope at Drexel University College of Medicine in Philadelphia. Read about the center's work and learn more about the disease and available therapies and aids, via easy links on this website. The foundation holds several annual fundraising events, and welcomes volunteers.

[BobbyB]

http://www.neuralsignals.com/images/DJphotoshopped%20small.jpg

Testimonials



"In my searching, this is the most accurate
and reliable EMG switch available.
It was very easy and an excellent
access method.... When the technology is used as a switch there is not a better solution for the nearly locked-in."

David Jayne, on the Muscle Communicator
15 year ALS patient & EZ Keys user



Allows those with ALS and other near locked-in conditions the ability to navigate their computer with a mouse or communicate with synthetic speech simply by using any part of their body that still has controllable muscle movement, such as the jaw, eyebrow, or even the eyes. Needs only very minor muscle strength, even muscles whose movement is visibly undetectable.

EMG, EOG, piezo, and button press switches are available.

http://www.neuralsignals.com/index.htm

[BobbyB]

Hands-Free Mousing
http://www.fentek-ind.com/nh-mouse.htm

Foot Controlled Hands Free Mouse
Avoid carpal tunnel syndrome and mouse induced Repetitive Stress Injury associated with desktop mice. Using the foot controlled mouse eliminates stress on the delicate hand-wrist area by moving mouse control to the feet. This prevents awkward wrist, elbow, and shoulder positioning before chronic pain develops. It also eliminates wasteful, repetitive "keyboard-to-mouse" hand movements increasing productivity. With the foot controlled mouse, you can have complete control of the cursor without having to take your hands off the keyboard, or your eyes off the monitor.

The foot controlled mouse is a two part system: one for cursor control ("slipper"), the other for mouse clicks and shortcuts (the "pedal"). The slipper shaped cursor controller is easy to use and efficient. With an elastic strap and velcro ends, it fits any size foot. The two-level pedal buttons mimic all regular mouse clicks but can also be programmed with any customized shortcuts (as many as 10 shortcuts for each program). It arrives preset with many popular shortcuts selected from widely used programs.

Features:
Two level ergonomic layout of control pedal
One pedal controls cursor movement. The other is for mouse clicks
Programmable buttons for defining any shortcuts/hotkeys
Window on monitor shows all button functions
Preset popular shortcuts for popular programs
Slipper shaped and efficient cursor controller
Powered by user-friendly Neuratron™ software
Compatible with Windows 98E, Me, 2K, XP, Vista; Apple Mac OS X 10.3 and later
Connection to computer is via USB Port

[BobbyB]

Susan's Path of Promise
http://pathofpromise.com/


As most of you know, I have had ALS for about three years now. I am really fortunate though because I still have the use of my legs. You all know this is very unusual for this cruel disease so I appreciate every day that I have this mobility. As you can see here I am with my son Vernon last year and recently standing on my beautiful deck where I love sitting in the morning watching the birds while I drink my coffee. Our deck is like a cool shady treehouse with lots of bright red Geraniums and other wonderful potted plants. Our tree shades the deck with a large canopy of rich green and we recently purchased some new feeders that are quite entertaining with the large variety of birds (and squirrels) that live here. Every day is a blessing. We now even have an RV especially equipped for me so I can get out and see the world a little.

I am also very excited to announce another blessing! I have chosen to travel to Belize, Central America to experience the potential wonders of the stem cell treatment at Eden Laboratories. I was so inspired by our online friend Jerry (www.stemcellman.com) and his miraculous results that it was an easy decision. My dear children Vernon, Lisa and Mary Jane will be accompanying me on this 'Path of Promise' if you will - a true journey to Eden. I'll have photos of us all to post very soon. My trip begins next week on August 8th and I am as excited as a my little grandchildren Rose, Lilly and Dixon at Christmastime!

I will post my experiences as much as possible throughout this time. Please comment back to me often and keep me in your prayers - as I will for you too. Much love and faith.

/////////////////////////////////////////////////////////////////////////////////////////////


frequently_asked_questions.

focusonals.com
http://www.focusonals.com/frequently_asked_questions.htm#WHAT%20CAUSES%20ALS/MND?


/////////////////////////////////////////////////////////////////////////////////////////////////




http://images.capwiz.com/img/stickers/newcap/top.gif

[BobbyB]

Wheelchair Accessories
http://simplywheelchairs.com/accessories-3760931-sr-1-Wheelchair_Accessories.html

[BobbyB]

http://www.alscare.com/images/main_01.jpg

http://www.alscare.com/index.asp

[BobbyB]

Fotios Tzimas
http://www.als-net.gr/
http://www.als-net.gr/images/Globe.gif

[Curious]

thank you bobby. fotios hasn't posted in along time and i was wondering about him.

click on the Hope link to read in english.

[BobbyB]

Advance Directive Forms
http://www.uslivingwillregistry.com/forms.shtm

[BobbyB]

http://www.druglibrary.org/drctitlenew.gif
http://www.druglibrary.org/

[BobbyB]

Partnership for Prescription Drugs
https://www.pparx.org/Intro.php

Individual Assistance Programs by drug/manufacturer
Brand Names
http://seniorliving.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=seniorliving&zu=http%3A%2F%2Fwww.needymeds. com%2F

We very recently realized my father was also able to get free medication through the Veteran's Affairs because he is low income (and a veteran)...something he hadn't even considered orginally. Cost may vary dependent on income.
http://www.va.gov/healtheligibility/...dicareDFAQ.asp


http://www.themedicineprogram.com/

http://www.themedicineprogram.com/free-medicine.html


http://www.needymeds.com/newuser.tml

There is a PILE of helpful information as well as access to, and instructions for, applications for free meds.

[BobbyB]

The Wheelchair Stair Lift From Stannah
Robin O'Brien
January 4, 2008


Stannah is a market leader in the manufacture of stair lifts and is one of the few that make a genuine wheelchair stair lift. However, buying and installing one for a wheelchair user is far from easy. In fact, most homes are not suitable for this type of lift. So, first you must find out if your home is suitable.

A wheelchair stair lift differs greatly from a conventional model. But first, let's get one thing clear; we're talking about inclined wheelchair stair lifts. This type travels up and down stairs - unlike vertical wheelchair lifts that resemble an elevator.

A regular stair lift consists of a chair that moves along a track. The track is always mounted on the stair tread and not on the wall. An inclined wheelchair stair lift consists of a platform that moves along a track. Because of size and weight considerations, the track is always mounted on the wall. Also, the platform of a wheelchair unit is considerably larger than the seat of a conventional model therefore the stairway must be wide.

So before even looking at a Stannah wheelchair stair lift you must first satisfy two conditions; are your stairs wide enough to accommodate the width of your wheelchair and platform, and are your stairs against a load bearing wall. If the answer to either of these two questions is no then a wheelchair stair lift is not the answer to your problem.

Stannah currently offer two wheelchair stair lifts; the Stairiser SX for straight stairs and the Stairiser CR for curved or turned stairs.

Some of the key features you get with both of these models are;

1. Is easily operated using simple control by the user or companion.


2. The platform automatically folds away or in to position when required.

3. Barrier arms and platform lock down before the platform moves.

4. Sensors will immediately stop the stair lift when any obstruction is encountered.

5. The platform can be accessed either from the front or the side - the side flaps lock and secure the wheels when the platform moves.

Unlike some wheelchair stair lift companies, Stannah don't custom make the platform. This would be the best option, however you are offered a choice of four platform sizes; 750mm x 900mm, 810mm x 1050mm, 810mm x 1200mm and 810mm x 1250mm. So these platforms should accommodate just about all wheelchairs.

Installation can be surprisingly quick. A Stannah unit can be installed in as little as one day for straightforward situations; however you should expect the installation to take far longer than this if you have a curved stairway - sometimes many weeks.

The price of a wheelchair stair lift from Stannah - or from any other company - is going to be expensive. An onsite inspection is required before the cost can be given.

All in all, a wheelchair stair lift is not a viable for the vast majority of wheelchair users, which is a shame. However, if you're one of the lucky few then the Stannah wheelchair stair lift is one model should take a look at. But, as buying anything else, shop around and get the best one for your needs.

http://www.bestchoicestairlift.com/stannah-stair-lift.php

Follow the links for wheelchair stair lifts and Stannah stair lifts as well as stair lift ratings.

http://www.americanchronicle.com/articles/viewArticle.asp?articleID=47989

[BobbyB]

M.C. Mobility Systems Simplifies Wheelchair Van Sales
Searchable Wheelchair Van Database Makes Purchasing Accessible Vehicles Easier
(EMAILWIRE.COM, January 09, 2008 ) Mentor, Ohio - M.C. Mobility Systems wants to introduce customers to its wheelchair van sales site that makes buying an accessible minivan or full size van easier. M.C. Mobility Systems’ quality wheelchair accessible vans offer the latest technological and innovative features. M.C. Mobility, with 4 Ohio stores in Cleveland, Columbus, Cincinnati, and Dayton, provides national sales and delivery services to customers across the nation.

To find out more about M.C. Mobility wheelchair van sales please visit: http://www.mcmobilitysystems.com/salessearch/sales.aspx

M.C. Mobility’s searchable wheelchair van database makes it easy to find the right accessible vehicle. Customers can choose from new and used vehicles, including Dodge, Buick, Toyota and Chevrolet vans, or they can search by color, type, or conversion, including Braun, Eldorado, IMS, Viewpoint and VMI conversions. M.C. Mobility’s easy to use website, friendly and knowledgeable customer service staff and nationwide delivery take the hassle out of buying wheelchair accessible vans.

Find out more about M.C. Mobility's wheelchair van sales here: http://www.mcmobilitysystems.com/salessearch/sales.aspx

“We know that our customers are very smart shoppers, so we wanted to give them a tool that would be informative and easy to use,” said Carmen Paterniti, owner of M.C. Mobility Systems. “Our website allows us to give our customers up-to-the-minute information about our inventory and what other options are available.”

While customers shop for wheelchair accessible vans, they can browse the M.C. Mobility site and view the big selection of mobility related products. Whether customers need vehicle ramps, lifts, power and turning auto seats, or wheelchair tie-downs, M.C. Mobility is the complete vehicle accessibility products resource. M.C. Mobility also invites customers to take a look at their specials and ask about extended warranties.

Get more information on M.C. Mobility's mobility related products here: http://www.mcmobilitysystems.com/products.aspx

About M.C. Mobility Systems, Inc.

Established in 1985 by Mark DiRosa and Carmen Paterniti, M.C. Mobility Systems offers wheelchair vans for sale and wheelchair van rentals in the State of Ohio with stores in Cleveland, Columbus, Cincinnati, and Dayton. M.C. Mobility’s mission is to offer persons with disabilities the most innovative products available and to empower them to make informed wheelchair van rental and purchase decisions.

For more information on M.C. Mobility’s wheelchair van sales, please contact:

Dennis Charvat
1-800-503-0052
7588 Tyler Blvd.
Mentor, OH 44060
lift@mcmobilitysystems.com



Contact Information:
M.C. Mobility Systems
Dennis Charvat
Tel: 1-800-503-0052
Email us


http://www.emailwire.com/release/10637-MC-Mobility-Systems-Simplifies-Wheelchair-Van-Sales.html

[BobbyB]

easy access "Library" searches for ALS

--------------------------------------------------------------------------------

Harvard Library "ALS" search

http://lms01.harvard.edu/F/SXEK2VVXY...%22&adjacent=1

Library of Congress "ALS" search

http://catalog.loc.gov/cgi-bin/Pwebr...&CNT=25&HIST=1

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new Book reference . . .

--------------------------------------------------------------------------------

Child Neurology, c. 2006, 7th edition
edited by John H. Menkes, Harvey B. Sarnat, Bernard L. Maria
abstract (from pages 187-188)
"In a few families, progressive degeneration of the anterior horn cells and pyramidal tracts appears before age 20 years. . . . transmission is either autosomal dominant or autosomal recessive. . . . Recessive forms of ALS usually have a juvenile onset . . . . The most prevalent form has been mapped to chromosome 2q33 and has been designated ALS2. . . . (is t)he most likely form to be encountered in the pediactric population (and can commence) as early as 3 years of age. . . . Treatment: No treatment is available."

so I ask, do persons with hereditary ALS try rilozule, and if so, is there recognizable benefits???

A table is included that shows fALS divided into five classes lables ALS1, ALS2, ALS3, ALS4 and ALS5.

not all are terminal.


MuonOne
Member
http://brain.hastypastry.net/forums/forumdisplay.php?f=82&order=desc
:grouphug:

///////////////////////////////////////////////////////////////////////////////////////
////////////////////////////////////////////////


NAVIGATING THROUGH ALS
A website dealing with mid and late-stage ALS issues for PALS, caregivers and service providers.
http://navigatingthroughals.blogspot.com/

////////////////////////////////

[BobbyB]

http://www.alscare.com/images/main_01.jpg

ALS CARE is committed to providing support to patients, their families, and caregivers by means of education and consultations. Living productive, yet challenged lives, ALS patients are educating the medical profession, their caregivers and the world about this disease. It is our mission to assist ALS patients with meeting their unique medical needs. Let us show you how.



ALS has an erratic and progressive nature, so finding answers to your daily issues can be a great challenge. You have landed in the right place.

ALS Care will support you with the ability to meet and handle your diagnosis. Finding the equipment, devices, web sites, physicians, articles . .


While caring for her first ALS patient in 1983, Mary Beth Geise discovered what would become her life's passion: advocacy for the home care needs of those suffering from ALS.

For nearly 22 years, Mary Beth has dedicated her career to this special group and their families. . .


Mary Beth Geise - "The ALS Nurse"

While caring for her first ALS patient in 1983, Mary Beth Geise discovered what would become her life's passion: advocacy for the home care needs of those suffering from ALS. For nearly 22 years, Mary Beth has dedicated her career to this special group and their families. Today, Mary Beth has emerged as a nationally renowned expert on ALS home care.

In 1986, Mary Beth opened a home health agency in Houston, Texas, specializing in ALS care. Her agency hired and trained nurses and PCAs to act as competent and reliable caregivers to ALS families. From routine tasks such as proper exercise and lifting, to the more complex job of tracheotomy care, maintaining ventilator equipment, responding to emergency breathing problems. The challenges of proper nutritional guidance with swallowing difficulties, preparing for a gastrostomy (feeding tubes- PEG) and maintaining bowel programs are just a few of Mary Beth's specialties. Discharge planners, insurance case managers, and social workers often sought out Mary Beth. The success of her work garnered attention in the marketplace, and in 1999 the national firm, Nursefinders, acquired her agency.

Aside from her personal experience both with her agency, and as a nurse herself, Mary Beth has a growing professional involvement with many organizations and institutions. Mary Beth served on the MDA Board in Houston, and has been a speaker for ALSA since 1988. She has traveled the country, and also internationally, acting as a consultant to groups in need of ALS patient care education. Mary Beth's expertise was sought after in 1991 by an American living in Japan with ALS. She worked diligently with the small remote village to "qualify the caregivers" like farmers and fisherman on the proper care for this ventilator-dependent patient. Her work has included consultations with numerous drug companies, in particular, Sanofi-Aventis for Rilutek, the only FDA drug approved to treat ALS. Mary Beth is also much sought after for speaking engagements, most recently presenting to a group of 200 nurses in Medicare/Palmetto, S. C. on Home Care for ALS.

Mary Beth's extensive professional experience is matched with her devotion to the ALS community. (Click here to learn more.)
http://www.alscare.com/images/mary_beth_sm.jpg
http://www.alscare.com/

[BobbyB]

http://mikebougher.com/_borders/Upper%20Border%202.jpg

http://mikebougher.com/

http://mikebougher.com/Mike%20Bougher%20Portrait.jpg

Although at 43 years old, I am paralyzed from the neck down and unable to breathe without a ventilator or speak after being afflicted with ALS, please don’t feel sorry for me. I am happier, and more fulfilled than I have ever been. Let me try to give you a glimpse into my life so far.

When I was of an impressionable age, a wise man taught me the phrase “The world is a smorgasbord, but most suckers are starving to death”. This concept became ingrained in me, and I live it every day. I have traveled far, had many diverse experiences, and look back with few regrets.

As my body has weakened to the point of being simply a support system for my brain, I have become more in tune with my soul, the world has more meaning, and my appetite for and ability to comprehend new knowledge has grown. Recently I have developed a passion for digital painting; and have been exploring Astrophysics, Quantum Mechanics, World History, Classical Music from the baroque period, the nature of human consciousness, Physical Anthropology of the Americas, the cultures, music, plights and spirituality of various Native American Nations, and Asian music, religions and philosophy. In the U.S., the blind and disabled library provides a large selection of books on tape via U.S. mail.

I have always been a traveler, and always will be. Because it is now more difficult to travel to distant places, I have begun a journey inward. I am on a quest to move toward the full potential of human consciousness, and achieve a higher awareness of the universe around me. This pursuit has been just as fruitful and fulfilling as any trip to a foreign culture. The souvenirs I bring back are extremely precious, and useful as tools to become a more positive force in this world.

I believe I owe the pleasure that life brings me to living in the present, mindfulness meditation, my solid upbringing, the "Law of Attraction", and the elegant partnership I share with my nurturing wife Jen. It is a beautiful gift to live on this hospitable planet, during this era of rapid scientific discovery. A time when more and more minds are opening to the interdependent reality of our world. We should all cherish every moment.

If you were recently diagnosed with ALS, understand that it is not necessarily the horrible experience that most say it is. From your unique perspective, you may have the ability to see the full beauty and diversity of this life. You have a choice.





When we meet real tragedy in life, we can react in two ways - either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength.

-Dalai Lama

[BobbyB]

Susan's Path of Promise

http://pathofpromise.com/

'Susie's swimmers'
stem cell treatment at eden labs in Belize
stem cell transplant therapy

http://www.edenlaboratories.net/
Belize
Medical Clinic
Eden Laboratories Ltd.
Consejo Shores, Corozal District
Belize, Central America
Telephone: +501.423.1060
Facsimile: +501.423.1043

[BobbyB]

http://www.mountainside-medical.com/images/Mountainside-Medical-Equipment-Mountains-Logo.gif

http://www.mountainside-medical.com/enteral-feeding-products

[BobbyB]

http://web.mac.com/lukerval/Site_4/Home_files/UserGetPicture.aspx.jpg

http://www.independencefund.org/

Foundations that Help Veterans

Independence Fund - has helped equip 8 disabled veterans with iBOTs

iBOT News

Wheelchair Bound Veterans Gain Independence
Couple vows 'fight to the death' to get coverage for wheelchair
Wheelchair is a medical need, judge rules
Judge Recommends Coverage of Stair Climbing Wheelchair for Navy Doctor’s Paralyzed Wife

Veterans

VA Watchdog
U.S. Department of Veterans Affairs
Board of Veteran Appeals
Paralyzed Veterans of America
Sports N Spokes
Paraplegia News (PN)
Disabled American Veterans
DAV Magazine
Stand Up 4 Vets
Veterans of Foreign Wars

Other Forums

CareCure Forums
Wheelchair Junkie


http://www.goibot.com/links.htm

[BobbyB]

http://store.accesstr.com/images/accesstr2/weblocation_text.gif


Wheelchairs
& Beach Access
http://store.accesstr.com/Page.bok?template=wheelchairs_index

[BobbyB]

adaptability tips and tricks
Adaptive Controllers: Video Gaming Accessibility
Link: GimpGear

Broadened Horizons' clients often utilize power wheelchairs while struggling to use tools with buttons, levers, knobs, and handles in a world designed around manual dexterity. Opportunities for travel, communications, recreation, education, and employment are severely limited due to the additional complexity of meeting their needs. Those limited by quadriplegia or tetraplegia, cerebral palsy, multiple sclerosis, muscular dystrophy, and Lou Gehrig's disease or ALS find our solutions ideally suited to their needs. However our solutions can also greatly simplify the lives of those with less limitations also; such as paraplegics, those who have suffered a stroke, brain injury, spina bifida, or other disabling disease or injury.


GimpGear
Adaptive Controllers
http://www.broadenedhorizons.com/videogaming.htm

[BobbyB]

http://bp1.blogger.com/_I2CczgZt_J4/R_64yUCshZI/AAAAAAAAABU/OXikFKy9ymQ/s320/Johnnypooldeck.jpg




John Miller ALS
http://johnmilleralsfund.blogspot.com/

[BobbyB]

http://www.abledata.com/images/banner2.gif

http://www.abledata.com/

ABLEDATA provides objective information about assistive technology products and rehabilitation equipment available from domestic and international sources. Although ABLEDATA does not sell any products, we can help you locate the companies that do.

[BobbyB]

Help for Children of Families with ALS
http://shelbie.org/

Welcome to Shelbie.org !
Our mission is to help provide funding for the extracurricular activities for the children of families afflicted with ALS through fund raising events and campaigns. To help ease the pain and stress of the tough decisions that are made due to the financial strain of managing ALS. To help ensure that all ALS families can afford the opportunity for their children to have constructive outlets for their interests, creativity, and abilities.

http://shelbie.org/


Shelbie.org
c/o Shelbie Oppenheimer
113 Equestrian Drive
New Hope, PA 18938

shelbieorg@gmail.com

[BobbyB]

http://bp0.blogger.com/_yPa7It24z3k/R8UYKkrfAOI/AAAAAAAAAJ8/EHal7aA5crU/S660/single+4x6.jpg

Fox Trotters
http://ericjfox.blogspot.com/2008/05/were-home-safe.html

Thank you for checking out our website/blog. By journaling and updating this website we will attempt to keep friends and family up to date on what is going on inside our lives. Living with a terminal illness (ALS) and demonstrating how God is working in our lives to bring Him glory during this trial. Be sure to click on and sign the BUDDYMAP and let us know where your viewing from. We appreciate your gracious prayers and support during this season of our lives! We Love You All So Much!

[BobbyB]

The new eye gaze accessory for the DynaVox Vmax (EyeMax)
From Dyna Vox Site

With a simple blink, click of a switch or by dwelling on the desired area of the screen an augmented communicator will be able to access all of the current capabilities and content of the DynaVox Vmax. The new EyeMax accessory can be added to any Vmax that has either 512MB or 1GB RAM and can be removed as needed for evaluations.

http://www.dynavoxtech.com/products/eyemax.aspx

[BobbyB]

http://www.alsmatters.org/files/ALSMatters3.png (http://www.alsmatters.org/index.php)

[BobbyB]

NORML Website

New Research Link
Check the left sidebar. As you scroll down, you’ll see the links I collect as I work on these stories. Heard about a movie on the Stash? Its website is down there. Heard an interview with an activist? Their website is down there. Now I’ve added a new category, Research, with all the links to scientific research and government statistics I use in my rants. Enjoy!

http://stash.norml.org/2008/12/10/new-research-link/

[BobbyB]

Today's Front Pages from newspapers around the world. [fun and may even be a bit useful.]


The below link is kind of fun and may even be a bit useful.







Just put your mouse on a city anywhere in the world and the newspaper headlines pop up. Double click and the page gets larger. Then you can either read the pdf version or click through to the paper itself in the upper right corner.



http://www.newseum.org/todaysfrontpages/flash/

Also, if you look at the European papers, the far left side of Germany will pop up as The Stars & Stripes (European edition). AND, this site changes every day with the publication of new editions of the paper.