Useful Websites

[David Hosobuchi]

Use this thread for posting other websites relevent to this forum....:)

[Young Gal]

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ALS forum

[BobbyB]

http://www.patientslikeme.com/images/logo_beta.gif
http://www.patientslikeme.com/patients
"A new system of medical care by patients, for patients."PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig's disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We're committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.

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http://www.patientslikeme.com/patients
Who We Are
Our company, founders, and board of directors are driven by our desire to change medical care by giving patients control of their disease. Discover who we are.

Why We're Here
Our personal experiences with life-changing disease are the reason we're so dedicated to our vision and community. Find out why we're here.

Contact Us
Whether you're a patient, doctor, researcher, clinic, or company, we'd love to hear from you and welcome you to contact us.

Your Privacy
When it comes to healthcare, your privacy is extremely important. Our terms of use and privacy policy are designed to put you in charge of your privacy.

Want to know more? Email us
General Inquiries
Drop us a note with any questions or comments.

email: support@patientslikeme.com

postal mail:

PatientsLikeMe Inc.
222 Third Street, Suite 0200
Cambridge, MA 02142

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http://www.magimedia.co.uk/buildforum/templates/subSilver/images/logo_phpBB.gif
http://www.magimedia.co.uk/buildforu...2b25b214 8671
build-uk.net
Building a motor neurone disease network for the UK
This site is for people affected by motor neurone disease (MND), that means people who:

live with MND
care for someone with the condition
have a family member or friend with MND
work in health or social care services
The forum can be used to contact others with a similar interest in MND - to decide what information and services should be provided, to tell people what you want and to share what you know. We have recently added a voting page and a chat room to communicate with others and let your views be known.


Build-UK Chat Forums
Committed to providing a site that is safe for everyone affected by motor neurone disease (MND).

MND related discussion
http://www.magimedia.co.uk/buildforu...2b25b214 8671

Chatroom
http://client1.sigmachat.com/sc.pl?id=144320


Foreign Language Forums
GREEK: Καλώς ήλθατε στο Ελληνόγλω&#
http://www.magimedia.co.uk/buildforum/viewforum.php?f=7

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http://www.als.net/images/logo-alstdf-longtext-lg.gif
http://www.als.net/forum/

ALS TDF Forum Statement of Purpose The purpose of this forum is to exchange information about ALS, scientific advances in ALS, and treatments for ALS.

About ALS TDF
The ALS Therapy Development Foundation is a nonprofit biotechnology company discovering treatments for patients alive today. Our approach combines the power of a nonprofit mission with the best practices of a for-profit biotechnology company: rigorous, open-minded research and proven drug development techniques.

Our Mission.
What We Do
ALS TDF combines the passion and dedication of a nonprofit organization with the entrepreneurial and scientific spirit of a biotechnology company.

Our laboratory, the leading drug discovery program for ALS, bridges a critical research gap.
Our in-house expertise translates research into potential drug candidates by screening drugs in the SOD1 mouse model of ALS.
Our scientific collaborations are designed to bring the most promising leads closer to patient use.
We share emerging knowledge on the disease with patients, physicians, and researchers as quickly and comprehensively as possible.
Every decision is made in the interest of finding effective treatments for people living with ALS.
Our unique approach accelerates drug development for ALS.


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[BobbyB]

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The ALS Advocacy Community http://als.clinicahealth.com/images/logo.gif
http://als.clinicahealth.com/

Welcome to our Community!
This is your place on the Web to meet friends, ask questions, and share stories -- all within a safe, secure environment. We hope you'll enjoy the time you spend here.

Things to Do
Sign up - it's free!
Join the conversation!
Read popular items!
Write a blog!
Meet new people!

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Living with ALS http://health.groups.yahoo.com/group/living-with-als/
http://us.i1.yimg.com/us.yimg.com/i/yg/img/i/us/ui/join.gif
Description
An avenue for persons living with ALS and their caregivers to communicate with the ALS community immediately, to share information, ideas, support and fellowship.

All posts sent to this list server are moderated by the manager.

Examples of post content that is appropriate for the list server and WILL be posted:
1) Questions about how to deal with emotional, physical, and social challenges of living with als.
2) Answers to these questions
3) Tips from PALS, CALS, and health professionals
4) Informative ALS or related news articles
5) Info about ALS related websites
6) Posts about upcoming ALS awareness events and fundraisers
7) Personal stories and experiences of PALS and CALS
8) Up to date information on research, drug studies, and advocacy efforts
9) Words of encouragement and inspiration for PALS and CALS going through hard times
10) Occasional (not excessive) quotes and stories that might be inspirational to PALS and CALS

Examples of post content that will NOT be posted to the list server:
1) Posts that have nothing to do with ALS related issues
2) Posts that preach a specific religious dogma in an effort to convert readers
3) "Amen" type mail that would be more appropriate sent to the individual you are responding to.
4) Posts that express disagreement with another person's post in a disrespectful manner. If you must express yourself in this manner please do so privately.
5) Jokes (please send those to your friends here privately)

Group Information
Members: 2488
Category: Care Giving
Founded: Apr 23, 1999
Language: English

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NeuroTalk Communities > Health Conditions A - L
ALS

http://homepage.mac.com/jakesan/DHP/page8/page15/files/page15_3.gif

[BobbyB]

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

[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

[Dina Scholtz]

ALSconnection at www.alsconnection.org is a patient driven registry that aims to collect data from persons with ALS (PALS). It is coordinated by Drs. Robert Miller, Jonathan Katz and Catherine Madison from the Forbes Norris MDA / ALS Research Center in San Francisco, California, a world leader in clinical ALS research.
The purposes are to learn more about the origin of ALS and to improve quality of care for people with this condition. Information provided to the registry will be used to evaluate variations in patient care and adherence to standards of care and to help foster ALS research.
We especially hope to learn about PALS who are not seen in larger ALS centers where data can be collected at the point of care. Through the internet we hope to reach more PALS in different regions.
We also hope to learn about the long-term experience with this disease. This will help us understand how to intervene more effectively. Therefore PALS who enter their data will be asked to update their data every 6 months.
We welcome your feedback and concerns about our project. While you are on-line we hope you will find valuable information on our site. We intend to update the contents and continue posting articles about different topics relevant to ALS. If there is a topic you would like to hear about, please let us know at scholtd@sutterhealth.org.
The ALSconnection team
www.alsconnection.org

[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
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ALS/MND Registry
http://www.patientslikeme.com/registry

[BobbyB]

http://www.alsmatters.org/distribution/styles/jomsilver/imageset/logo_joomla.png

http://www.alsmatters.org/

[BobbyB]

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