Did you Know...

[BobbyB]

Did you Know...
- The US Government spends an average of only $400 per ALS patient per year

- 80% of all patients die within 5 years

- ALS can strike anyone, anywhere and anytime

- The 1 FDA-approved drug for ALS patients extends a patient’s life by only 3 months

- Average age of onset is 48 years old

- People don’t get ALS... Families get ALS!




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

This is the registry for Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease, or ALS) patients. I originally started it as a mailing list and it is now being maintained on the PatientsLikeMe site. If you are a Person with ALS (PALS), you can add your name by signing up for a PatientsLikeMe account and filling out your profile.

it will be more then just a registry for pals, you can have you own detailed profile page.
If you have any questions email PatientsLikeMe at support@patientslikeme.com (support@patientslikeme.com).

You can help by passing this info on to other PALS.

http://www.patientslikeme.com/registry (http://www.patientslikeme.com/registry)

Thanks,
Bobby Brannigan (PALS, diagnosed 1994)

robertb@mitchell.main.nc.us (robertb@mitchell.main.nc.us)

ALS IS NOT PREJUDICE
WHERE EVER, WHEN EVER, WHO EVER

[BobbyB]

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

This is the registry for Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease, or ALS) patients. I originally started it as a mailing list and it is now being maintained on the PatientsLikeMe site. If you are a Person with ALS (PALS), you can add your name by signing up for a PatientsLikeMe account and filling out your profile.

it will be more then just a registry for pals, you can have you own detailed profile page.
If you have any questions email PatientsLikeMe at support@patientslikeme.com (support@patientslikeme.com).

You can help by passing this info on to other PALS.

http://www.patientslikeme.com/registry (http://www.patientslikeme.com/registry)

Thanks,
Bobby Brannigan (PALS, diagnosed 1994)

robertb@mitchell.main.nc.us (robertb@mitchell.main.nc.us)

ALS IS NOT PREJUDICE
WHERE EVER, WHEN EVER, WHO EVER



http://www.patientslikeme.com/registry (http://www.patientslikeme.com/registry)

Subject:
New updates... ALS Registry!
Received:
Apr 10, 2006 04:59PM
From:

jcole
(admin)


Hello everyone, here's an update about the latest PatientsLikeMe features and what we have planned for the near future.

First, we are excited to be working with Bobby Brannigan to host his ALS Registry on PatientsLikeMe. Bobby has been maintaining his list for a while through email and we hope by hosting it on PatientsLikeMe we can add some additional functionality and keep it as up-to-date as possible. The registry works by listing PatientsLikeMe members, their first and last name, and basic profile. It can be viewed by anyone, not just PatientsLikeMe members. If you would like to be included in the registry, set your registry permission on the Account Info page and make sure you have set your first and last name as well.

Also, you can now tell us about yourself in an extended bio. Fill it out on the Bio page. Other members will find your bio on your profile page.

We have some exciting features planned in the future, including the ability to leave comments and feedback for patients on their profile page. Plus, we keep adding improvements and fixes every day. If there is something you would like to see fixed or added, just let us know!

Thanks again for your participation in the PatientsLikeMe community, and as always, keep spreading the word!

-Jeff


http://www.patientslikeme.com/registry (http://www.patientslikeme.com/registry)

Account Info First Name
Last Name
Email
Privacy Level Visible

Include in Registry I want to be listed in the ALS registry.
Non-PatientsLikeMe members will see my basic info (name, age, disease onset, diagnostic history). The registry permission is independent of any privacy levels you have set above. To be listed, you must include your First Name and Last Name.


Did you Know...
- The US Government spends an average of only $400 per ALS patient per year

- 80% of all patients die within 5 years

- ALS can strike anyone, anywhere and anytime

- The 1 FDA-approved drug for ALS patients extends a patient’s life by only 3 months

- Average age of onset is 48 years old

- People don’t get ALS... Families get ALS!
_________________
National Registry for Amyotrophic Lateral Sclerosis [ Lou Gehrig Disease ] ALS.
http://brain.hastypastry.net/forums/forumdisplay.php?f=77 (http://brain.hastypastry.net/forums/forumdisplay.php?f=77)