ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 11-22-2006, 12:54 PM #1
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BobbyB BobbyB is offline
In Remembrance
 
Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
10 yr Member
BobbyB BobbyB is offline
In Remembrance
BobbyB's Avatar
 
Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
10 yr Member
Smile PatientsLikeMe Community,

PatientsLikeMe Community,

It has been over 6 months since we launched the ALS PatientsLikeMe community, and in the spirit of Thanksgiving, we would like to give a hearty Thank You for sharing your information and your experiences on PatientsLikeMe.

To illustrate how far we’ve come since launch, our community consists of 961 members!

• 655 registered PALS
• 245 registered CALS (28 CALS linked with a PALS)
• 61 Guests

Putting these numbers into perspective, if a research team ran a clinical trial on our patient base, we would have the largest ALS clinical trial in history! As you can see, the completeness and accuracy of your information is important since we not only share the data with each other to learn, researchers will mine the information for knowledge and research in the future. If you haven’t updated your profile recently, now is the time!

We are very happy to see the number of CALS who have joined PatientsLikeMe as well. With the MyCareTeam functionality, PALS can invite their CALS to the system and link to them to share information. We would love to see 100% participation linking between PALS and CALS. So for those of you PALS whose CALS are not part of PatientsLikeMe, feel free to invite them to join by using one of the Invite buttons in the MyCareTeam area. And for the CALS, if you think PatientsLikeMe is the right community for your PALS, tell him/her about us. We want to create the best ALS community in the world; and that only happens with all of your participation.

In terms of treatments and symptoms, the community has captured 579 treatments and added 42 more symptoms to monitor. These efforts help us to collectively identify the effective treatments. We hope that you’re taking full advantage of the collective knowledge we’re gaining everyday.

Again, thank you all for sharing your information, experiences, and insights. For the U.S. members, have a safe and happy Thanksgiving holiday!

Sincerely,

The PatientsLikeMe Team
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ALS/MND Registry
http://www.patientslikeme.com/registry
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