PatientsLikeMe was a proud sponsor of the National Parkinson’s Foundation Young-Onset Parkinson’s Network (YOPN) Conference in Atlanta, GA last week.
The event, coordinated by and for people living with Young-Onset Parkinson Disease (YOPD), was a huge success. Paul Wicks and I (Maureen Oakes) enjoyed working at the booth, meeting many of our current members and spotting PatientsLikeMe t-shirts in the crowd. Paul was a presenter at the conference, and his session “Taking Control of Your Parkinson’s by Sharing Online” was well attended and received by current and future PatientsLikeMe members. One of the themes that came up repeatedly at the conference is that living with YOPD, like any other life-changing illness, can be a very isolating experience. The YOPN Conference presented its attendees the opportunity to spend the weekend learning more about their condition, expanding their knowledge about the latest treatments and choices, and most importantly, meeting other patients like them.
As a community manager at PatientsLikeMe, much of my job is watching. I read the forum to observe what people are discussing, I look for questions and ideas on how we can improve different areas of the site, and watch as members learn and relationships grow. But, one of my favorite things to watch is when our members meet each other in real life. As they did at the Unity Walk, many PatientsLikeMe Parkinson’s members wore “badges” with their usernames and pictures to help identify each other as they met their online friends face-to-face for the first time. These relationships blossom very quickly because they are rooted by their shared experiences, and that is a wonderful thing to watch.