HealtheVoices ’17: Together We’re Better


Over 100 health advocates gathered recently in Chicago for HealtheVoices17, a conference sponsored by Janssen US, a division of Johnson and Johnson.  Through a competitive process, each of us submitted our application and a video or blog, talking about what we hoped to gain by being with this group.

The MS group, minus Nicole Lemelle.

It is worth noting that Janssen does not have a presence in the multiple sclerosis market, yet there were five MS bloggers in attendance and it’s always great to spend time with Lisa Dasis, Yvonne Desousa, Nicole Lemelle, and Dave Bexfield.  It was an open event, and although there were many people who benefit from the work of Janssen, there are a good number of us who didn’t have a direct connection to their pharmaceutical pipeline.


Why Attend?

For me it was quite simple – I live and write in the world of multiple sclerosis, and I know that many people who have MS also have other conditions, also known as comorbidities.  I hoped that I could learn more and discover ways to bridge our conversations to include these other health concerns. I was also hoping to find new ways to relay my message that might better resonate with others.

Who is Nicole Lemelle with now? It’s Yvonne Desousa and me!

HealtheVoices17 focused on giving us the tools to better connect our messages into our communities and beyond. There were professional presentations from YouTube, Facebook, and some big name health information websites, as well as talks from fellow advocates. I am pretty much stuck on my relationship with my computer keyboard and the ‘printed word’ of blogging, but I now know that many of you would prefer to see a video or animation to tell my story. I may give it a try, and have even bought a few little pieces of support equipment needed to do this easier, but I am still very much a fan of the written word.

There was plenty of time during meals and breaks to talk with others and learn more. High level executives from Janssen and J&J attended the sessions and meals, and appeared sincere in their questions about who we are and what we do. Janssen has a large presence in treating Types I and II diabetes, HIV, psoriasis and inflammatory bowel disease, so many of the people at HealtheVoices17 were representing those communities.

Johnson & Johnson is so committed to helping us with advocacy needs, a donation of $30,000 was made to the HealtheVoices Impact Fund, a newly formed foundation.  You don’t have to be a HeatheVoice participant to apply for these funds but you do have to be speedy because the deadline is coming up soon (June15).

We’re More Alike Than Different

The labels of our diseases quickly fell to the side and we slipped into just being a group of dedicated healthcare advocates, as opposed to a person with MS, psoriasis, prostate cancer, mental health or any of the many other conditions represented. One theme that quickly became clear is these are passionate people who do this because they genuinely care and believe they can make a difference. I know I am passionate and would be disappointed to think that no one has been helped by my words.

Who else met Nicole? Why it’s ActiveMSer Dave Bexfield.

The idea of an ‘all expense paid’ trip to Chicago might sound glamorous, but it is physically demanding and means more time away from our homes and family.  We went because we care and we want to try harder and do better for the people we connect with regularly. Part of that requires us to not be content with what we are doing now, but to grow, and the HealtheVoices17 conference was the perfect atmosphere, supported by people who are on the same journey. Note: all of my expenses were paid by Janssen US, but all of the ideas and opinions here and elsewhere are always my own and at now time have they suggested any editorial content to write about.

Advocacy Challenges

I gained renewed enthusiasm and fresh ideas to put into practice for my ‘work’ in healthcare advocacy but making these new connections, sharing stories of our success and challenges, was the best pay out of all. In case you don’t already know this – being an advocate while dealing with our own personal health challenges is a tough task at times.  It is mentally demanding and often physically exhausting.  There is a great need for accurate information and shared experiences, and as advocates we work continuously to connect with our communities.  It is often a thankless task, there aren’t enough awards or recognition given for this devotion of service to others.  HealtheVoices17 was an acknowledgment and a small way to give back to my advocacy peers.

A composite view of 105 passionate advocates at opening session


I learned more about the sponsor – Johnson & Johnson has a long history in American healthcare.  I celebrated the success stories of the amazing advocates who were in attendance. And I came away with a renewed passion to speak up and reach out for my community. Gatherings like HealtheVoices17 that focus on empowering advocates with tools, resources and connections without asking for anything in return are rare, and I am truly honored to have been chosen to attend.

Be well,



PS – there have been some great things written about this conference, and I share just a few links here – I hope you will take the time to read about their experiences as well.

Dave BexfieldCollective Voices, Dropping the Mic


Luke EscombeNo-one wants to hear you talk about your chronic illness” – what I learned at HealthEvoices 2017

Howard Change: My Surprising Takeaways from the HealtheVoices Conference

Yvonne DeSousaHealthe Voice Abound