This month marks the two-year anniversary of our flagship ALS community. It’s amazing to reflect on what we’ve achieved in just two short years. Not only did we build the world’s largest treatment and outcome sharing communities for ALS (1,800+ patients), MS (4,500+ patients) and Parkinson’s (1,300+ patients), but this year we began evolving into the powerful research platform we always envisioned we could be.
At the heart of this research initiative are our new community reports, which analyze the makeup of our patient communities. In January, we released our first MS Community Report covering factors such as first symptoms, age of diagnosis, disease type, etc. Recently we released our ALS Community Report, with the Parkinson’s Community Report to follow shortly. You can find the much-anticipated results on the blog as well as the ALS forum.
But that’s just the beginning. Your commitment to collaborative learning has now driven our evolution to the next level. On March 7th, we launched the ALS Lithium Study. As co-founder Jamie Heywood wrote in a recent blog entry, “Today, we allow patients to begin to answer how to treat ALS.” What could be more central to our mission than that? We are delighted to collaborate with Humberto Macedo, a patient, and Karen Felzer, PhD, whose father has ALS, on the study. “Together…we will run the first real-time, real-world, open and non-blinded, patient-driven trial,” wrote Heywood.
The question at hand is: Does lithium slow ALS? With almost 150 patients participating to date, we already have more than eight times the number of participants as the most recent published study about lithium and ALS. Stay tuned as this exciting and unprecedented study continues. As always, thanks to everyone – whether involved in the study or not – for sharing your treatment data. You made this study possible, and we intend for it to be the first of many across our communities. The age of patient-led research is here!
Finally, we are thrilled to announce the March 23rd launch of our beta community for Mood Conditions, which coincided with the New York Times Magazine article, Practicing Patients. If you know anyone affected by Mood Conditions such as depression, bipolar disorder, obsessive compulsive disorder (OCD) or anxiety, please invite him or her to join PatientsLikeMe today.
This site has the potential to become the next wikipedia phenomenon, but with a more crucial focus. Information has been my life’s profession and I see that what you are doing with medical information has taken on “Radical Trust” and so much can get done when we trust each other. With the right wikipedia-like processes, concepts and quality controls I think that Patients LIke Me will be the next big breakthrough in health care.
Kathleen,
Thank you very much for your support. We agree with your insight and believe that people collectively can help improve health outcomes for themselves and for others through the structured sharing of information.
Trust is a huge point. We honor the trust the patients place in us to share their health information. People trust other people like themselves, and we want to continue to foster that trust at PatientsLikeMe.
I praise your site. It has truly uplifted my spirits since I found this site. Being able to converse with others who have similar problems has tremendously helped me! I love this site and all the great people I have met in only one week!!
Belva,
Thank you so much for your comment in sharing your site experience. Let us know if there’s any way we can make your experience even better.
The PatientsLikeMe Team