Standing on the Shoulders of Activists Who Came Before Me

A couple of weekends ago (and I really cannot believe it's taken me this long to post about it, except I also sorta can, because -- well, life), I was in Chicago for HealtheVoices16, a conference I'm proud to have advised on over the past few months. I got to help shape a weekend in which nearly 100 of us gathered to talk about our online communities across a number of health conditions -- HIV/AIDS, diabetes, mental health, cancer, Crohn's/colitis, and rheumatoid arthritis, to name a few. We talked, but we didn't just talk -- we made deeply rooted connections, the theme of this year's conference.

One example: AnnMarie Otis of Stupid Dumb Breast Cancer was there, and it was our first time meeting in person even though we've been in touch on social media and even over the phone for years. Yes, she is as tiny and fierce and passionate in person as she is in her online presence. We hugged and cried a little. We talked about our mutual love of Birkenstocks and our Sunday Italian family dinner traditions. We practiced yoga together. I'm the one in the crazy pants.

Starting off #HealtheVoices16 with restorative vinyasa yoga pic.twitter.com/Asboj0Zjfe

— JanssenUS (@JanssenUS) April 16, 2016

On Saturday night, AnnMarie was at my dinner table. We sat next to an HIV activist, Aaron Laxton, who is as brilliant as they come. I could listen to that man talk all day about viral loads, clinical trials, and the work that still needs to be done in bridging the gap between the 'haves' and 'have-nots' in this country (not to mention the world at large).

I implore you to click on the links to Aaron's story. He talked to me about prognoses for those infected with HIV; it's pretty good so long as the person receives treatment. AnnMarie and I marveled at how far the metastatic breast cancer community still has to go. "We are in the freaking dark ages," she said to me at one point. To which Aaron responded, "I am standing on the shoulders of the activists who came before me. Let me help your community."

And then I started crying. Again.

***

As part of my conference duties, I had the honor of introducing a session speaker, Trevis Gleason. Trevis lives with multiple sclerosis (a word, I learned, that is very hard for me to say when speaking in front of a group). He's also a former chef from Seattle who now spends part of his time in Ireland. After blogging about MS for some time, Trevis wrote a memoir I can't wait to read, Chef Interrupted: Discovering Life's Second Course in Ireland with Multiple Sclerosis. His talk to our group was about taking our advocacy efforts offline, something I've been trying to do more of over the last year.

I've got a conversation scheduled with my agent this week about whether my book has garnered any interest from publishers (WHY DOES THIS PROCESS TAKE SO LONG). Aaron (the guy in the photo above) is going to teach us in the MBC community some advocacy tricks. I am participating in a Twitter chat about metastatic breast cancer with the Tigerlily Foundation in early May...which is suddenly next week. And I am waiting to hear about an advisory role with the Young Survival Coalition.

I am inspired, and can't wait to see what lies ahead.

But first, camping with Quinn's preschool this weekend. Because -- well, life.

** Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.**

Heading to the Windy City

As I said, I'm working on a few advocacy endeavors, trying to figure out what I'll do with all my free time once this puppy is potty trained and Quinn is in kindergarten next year. KINDERGARTEN! I swear he was just learning to walk last week. Now look at him go (in the dark green).

Quinn hits the slopes from Jennifer Campisano on Vimeo.

One of the things I've signed up for is an advisory role for a conference taking place in Chicago in April. It's on how to build better online communities for healthcare, how to amplify our voices as patients and find each other as we stumble around in the dark after a devastating diagnosis, waving our little candles of shared experiences at one another.

Can you relate? Have you got an online presence in the healthcare space? Are you living with a disease -- whether cancer, diabetes, mental illness, HIV/AIDS, you name it? If so, I encourage you to apply to attend.

If selected, each participant's airfare, provided meals and hotel costs will be covered by Janssen and you will receive a formal agreement for your review and signature indicating that you agree to these terms. Janssen is accepting applications through February 22, 2016.

"The mission of HealtheVoices is to provide educational tools, resources and inspiration to help you better serve, expand and grow your online communities. We believe our 2015 conference was a great success because of the close connections that were formed across multiple health conditions, and we want to encourage you to consider being part of the conference again this year.

This year’s conference will feature nationally recognized keynote speakers focused on the power of online patient communities. New sessions will highlight the value of video blogging, how to maintain consistent fresh content for your communities, growing your impact as a patient advocate, while returning favorites will dive into new areas in analytics, how to handle compassion fatigue and more!

Janssen will once again be covering costs for travel and hotel accommodations."

You can see my post on last year's conference here, help the folks at Janssen's partner Everyday Health out by taking a survey about why you read my blog (and others) here, and look at some of last year's highlights and SUBMIT YOUR APPLICATION TO ATTEND THIS YEAR'S CONFERENCE HERE. I hope to see you there! And if I miss you in April, I'll be returning to Chicago in June, but that's a post for another day.