Showing posts with label collaboration. Show all posts
Showing posts with label collaboration. Show all posts

Monday, April 25, 2016

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.



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.**

Monday, February 8, 2016

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.

Tuesday, April 21, 2015

You Can't Judge a Book by Its Cover

Although I haven't seen the movie, I just finished reading / listening to Unbroken: A World War II Story of Survival, Resilience, and Redemption by Laura Hillenbrand. (Side note: did you know you can switch between the two -- reading and listening -- and Kindle/Audible will sync with one another for some books?! This isn't sponsored, just a tip that blew me away and made finishing this book infinitely easier for me because I could listen while I hiked or drove because I haven't had much time to sit lately, so I thought I'd share.) The irony is I had treatment yesterday and have hardly left the couch today.

Unbroken is an epic tale of one man's life, from boyhood rebellion to Olympic runner to airman in World War II. In the war, his plane went down in the Pacific and he was stranded at sea for more than forty-five days on a disintegrating life raft. When he was "rescued," it was by Japanese, who put him in a variety of POW camps where he survived the unthinkable for more than two years. On the back cover blurb of the book, it says: "Unbroken is an unforgettable testament to the resilience of the human mind, body, and spirit. . ." 

My reading of such an incredible tale was timely, as I headed to a conference last weekend where I met dozens of people who are a further testament to the resilience of the human mind, body, and spirit (not to compare what we've been through to what our servicemen endured in WWII, but humanity in the face of hardship can be pretty incredible). The HealtheVoices 2015 Conference brought together more than sixty health bloggers from around the country, representing various conditions for which we advocate (and for most of us, live with): cancer, HIV, diabetes, cardiovascular disease, mental illness, Crohn's/colitis, and rheumatoid arthritis.


This conference was, as far as I can tell, the first of its kind. It brought dozens of voices together to explore how to collaborate across our varying ailments, think about how to raise the volume on our advocacy efforts, and -- most importantly, I think -- discover ways to more effectively serve the patients and caregivers who turn to us for support.

The summit was sponsored by Janssen Biotech, Inc. in collaboration with Everyday Health, and I should point out that Janssen paid for my travel expenses for the summit. All thoughts and opinions expressed here are, of course, my own. 

I spent all day Friday traveling to the NYC area, where I was greeted by Ann Silberman of Breast Cancer? But Doctor. . . I Hate Pink! I've known Ann online for a couple of years, and I'm pretty sure she's the reason I got invited to this summit, so I was especially excited to meet her in person. And as Shakespeare said, “Though she be but little, she is fierce!”

There was a cocktail reception that evening followed by a dinner program in a windowed room overlooking the Hudson River and the New York skyline. It was an effort to focus on the speakers and not the view (seen here the next morning when I got up early to walk around a bit and soak it in).


Saturday kicked off with an inspiring and entertaining keynote by Dr. Zubin Damania (aka ZDoggMD), who told us we were part of the next wave of medicine, Medicine 3.0, if you will, in which medical information would be open and available to patients, relationships between providers and patients would exist like they did in the past, but would be more of a partnership and less of a paternalistic relationship, and that we, as online advocates, would be part of making that transition happen. He spoke to us about leaving his career as a doctor at Stanford (by way of some hilarious and avant-garde videos) to help open a membership-based (like a gym!) primary care clinic in Las Vegas that goes beyond traditional medicine by offering a range of services, including yoga and counseling.

Saturday was a whirlwind of breakout sessions on a range of topics aimed at making us better at what we do, including a session on legal issues in online advocacy that almost made me nostalgic for law school.

There was a little time for catching up with other attendees between sessions and during meals, and then we broke into smaller groups for dinner Saturday night, where I had the privilege of sitting next to the inspiring Chrisa Hickey, who writes about living with a son who was diagnosed with schizophrenia when he was just eleven years young. She has taken this challenge and turned it into a loving and safe online community of parents facing similar circumstances.

Like so many bloggers I met this weekend, she has been faced with the unthinkable, picked herself (and others) up from the doldrums, and put one foot in front of the other until life was bearable again. Resilience, indeed.

After dinner, I spoke with a man who was diagnosed with Stage 4 prostate cancer more than nine years ago and told he would probably die soon. He did not. I met a marine who was about to be deployed to Afghanistan when he got the terrible news that he was HIV positive. I spoke with another young mom who is sometimes debilitated due to her rheumatoid arthritis. Not one of these people looked sick. I don't look sick, either.

Here is a photo of those of us who were attending and write about breast cancer. Four of the five of us have been told we have metastases. Three of the five of us are in remission. I don't think any of us appear ill. (From left to right: Kathy-Ellen Kups, RN, Life with Breast Cancer; me; Vickie Young Wen, I Want More Than a Pink Ribbon; Ann Silberman; and Heather Lagemann, Invasive Duct Tales.


What I learned this weekend above and beyond how to be a better advocate, if I didn't know it already, was you never know what someone else might be going through. I looked around the room and realized that if we weren't all there together, I would never expect most of these people were facing any health hardships. You just never know. The old adage is so true: you can't judge a book by its cover. Also, never underestimate the resilience of the human spirit.

Monday, February 16, 2015

A Collaboration: Project Heart Yourself / Infinite Hope

In October, my friend Jenny (hairstylist extraordinaire, the beautiful and talented Jenny Strebe of Confessions of a Hairstylist and founder of Project Heart Yourself) sent me a text message asking if I'd like to work with her on a jewelry piece -- something for breast cancer awareness (but enough with the pink ribbon already). Something a little more honest and special that would really pay tribute to women at all stages of treatment and at any stage of this disease. I love Jenny's style and her commitment to empowering women, and I jumped at the chance to work with her.

As we started brainstorming, we quickly found we were on the same page, and pretty soon had a design in place, a simple infinity symbol, standing for the infinite hope that carries us through some of our darkest days. The Infinity necklaces are now available for purchase here/here, and the proceeds will go to a local organization helping moms who are going through cancer treatments.

A photo posted by Jen Campisano (@jencampisano) on

Project Heart Yourself is all about empowering women to love themselves, something I've realized is infinitely important to getting through cancer. As Jenny would say, "Loving yourself is one of the hardest but most paramount aspects to life. You do not always have control over what happens to you, or in you but with grace you can accept it and learn to continue living a beautiful life."

If you're interested, you can read the very kind words Jenny's blogger had to say about me here. It had me blushing just a bit, and then nearly in tears. I'm so honored to be a part of this project.