A group of 100 health advocates gathered to speak up and share their voices this past April in Chicago. The third annual HealtheVoices Conference brought bloggers, YouTube creators, support group leaders, and other advocates together to network and learn how to amplify their messages.
“One thing that I have noticed is the amount of opportunity for somebody living with a different health condition to learn about another health condition, and how much they are similar and how much our … journey goes through some of the similar stages,” said Josh Robbins, an HIV advocate who blogs at ImStillJosh.com.
The conference featured advocates from the around the world, spanning many conditions such as diabetes, HIV, rheumatoid arthritis, psoriasis, multiple sclerosis, and mental health. The attendees joined sessions on combatting the stigma of chronic illness, and how to better use social media to create community.
Ryan Stevens lives with Crohn’s disease and shared how his condition developed and why he became an advocate in a Healthline-hosted Facebook Live video.
“Before I was diagnosed, I had never heard of Crohn’s disease ever,” Stevens said. To raise awareness and money for research, Stevens swam across Lake Erie from Canada to Erie, Pennsylvania. Today, Stevens writes a blog called CrohnsGuy.com.
Megan Starshak, who lives with ulcerative colitis, also attended the conference and participated in the live interview.
“I tell people one of the most important things they can do is to meet other patients and other people who understand what they are going through,” she said. “When you meet somebody that truly understands the horrors of incurable disease and can look you in the eye and see that understanding, it changes your whole world. For me, that was a turning point in my own journey with being OK living with this. Seeing that paved path ahead of me has changed everything for me, and now I just want to pass that on to other people.”
To further support the work of online health advocates, the conference presenter, Janssen Pharmaceuticals, also announced the creation of the HealtheVoices Impact Fund, a new grant program created to support innovative efforts by online health advocates to serve and assist patient communities.
“Online health advocates have immeasurable impact on people living with chronic and life-altering health conditions, providing patient-to-patient support, education, and essential resources,” said Rebecca Tillet, Regional Communication & Public Affairs Lead, The Americas, Janssen Pharmaceuticals, Inc.
Advocates attending the conference were accepted through an application process, and all travel and lodging expenses were paid for by Janssen Pharmaceuticals. Healthline was a sponsor of the conference and paid for all expenses associated with its attendance.
For more on the HealtheVoices Conference from the perspective of other attending advocates, visit these sites: