We’ve been learning about how connected our patients are this week in our blog series called “One for All.” In the first two blogs by Jeff Cole, we read (and saw through cool graphics) how some of our members are initiating an unparalleled universe of dialogue. Today, we sit down with one of those members, Diamondlil58. A true “diamond” in the MS community, she has left more than 16,000 comments to welcome other members and get conversation started. Here’s our interview with one of the founders of our PatientsLikeMe “Welcome Wagon,” Diamondlil58.
2 posts tagged “profiles”
You’ve spotted us again! This weekend, PatientsLikeMe was a proud sponsor of the AIDS Walk/Run at Grant Park in Chicago on September 20, 2008. The event, benefiting the AIDS Foundation of Chicago and 70 other local organizations, brought together more than 7,000 people on this warm, sunny day to show their support in the fight against HIV/AIDS. Together, participants raised a projected $400,000 for AIDS-related services.
David Williams, Catherine Brownstein and I were at this event, and we were thrilled to meet so many great people, including one of our current members. As we saw at the AIDS Walk in Boston, there were an overwhelming number of support groups and organizational leaders there dedicated to helping patients.
The PatientsLikeMe HIV community, in particular, was met with great enthusiasm. Our booth visitors loved that we had social networking components on the site, but were more excited about the patient profiles and treatment reports. We displayed sample profiles to show how members can chart their treatments, symptoms and outcomes (like CD4 counts and viral loads), and use that information to find others exactly like them. Many people had heard of websites that offer a place to chat with others, but this health data-sharing approach was new and interesting to all. Let’s just say heard a lot of “wows,” which is always exciting and validating for us.
If you’ve been following our blog, you’ll notice that we’ve been out and about quite a bit this Fall spreading the word about PatientsLikeMe. We’ve exhibited and presented at many events, including the Young-Onset Parkinson’s Network Conference, DBSA Annual Conference, MS Challenge Walk and now the AIDS Walk Chicago. We hope those we’ve met will find their way to our site, and share their stories, their health data, and their passion for advancing the knowledge of these conditions.
We’ll be here – our community arms wide open.