[BobbyB]

Welcome to the ALS/MND Registry
http://www.patientslikeme.com/registry
520+ pals from 38+ countries

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.

I am excited about what we can do with the ALS/MND Registry at the new PatientsLikeMe 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. I think this is going to be great. It is a registry that has detailed information from the patients who want to share it. Plus you can come back as often as you want and update your info, so it is as current as possible, plus see what other pals are doing and how they are doing it, what they are taking.

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

http://www.patientslikeme.com/registry

Thanks,
Bobby Brannigan (PALS, diagnosed 1994)

robertb@mitchell.main.nc.us

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

PatientsLikeMe
A new system of medical care by patients, for patients
a.. Discover better ways to manage your disease.
b.. Benefit and learn from shared experiences.
c.. Connect to those making a difference in your disease.
d.. http://www.patientslikeme.com/

[BobbyB]

Dear bobby:

The ALS Association is pleased to announce that online registration is now available for the 2007 National ALS Advocacy Day and Public Policy Conference, which will take place in Washington, DC May 14-16, 2007. Please click here to register to attend the conference and to find additional information, including a printable registration brochure that provides a detailed schedule of events for this year’s conference.

In addition to Advocacy Day on Capitol Hill, this year’s conference includes the 5th annual candlelight vigil and exciting sessions on ALS research and initiatives designed to speed access to new treatments for the disease. We encourage you to register before April 13, 2007 in order to receive the discounted registration rate of $75 ($150 if you are not affiliated with an ALS Association Chapter) and to ensure that you receive additional materials from the Advocacy Department prior to arriving in Washington. After April 13, registration fees will be $150 ($300 for non-affiliates). Registration fees are waived for all people with ALS. Fees also are waived for a caregiver attending with a PALS (waiver applicable to one caregiver per PALS).

This year’s host hotel will be the Renaissance, Washington DC Hotel. Contact information for the hotel is provided on the registration site so that you can make your hotel reservations when you register to attend the conference. In order to receive the reduced room rate, you must reserve your room directly with the hotel by April 13, 2007. To request an ADA accessible hotel room, please contact Mary Wisniewski, event planner for The ALS Association’s 2007 National ALS Advocacy Day and Public Policy Conference, at marywisniewski@comcast.net, or by phone, 202-746-0043.

The ALS Association looks forward to seeing you in Washington this May!