Monday, May 7, 2018

PCL29: HealtheVoices 2018 - Day 3, Next Year, and My Takeaways

Days One and Two of HealtheVoices18 Were Incredible and There Was Still One More Day.


As I woke up on the final day of HeatheVoices18, I couldn’t help but reflect on the themes of the first two days (read more about days one and two here). While the first day of HealtheVoices18 (a health advocates conference I attended in Chicago in late April 2018) was a marathon of inspirational messages, my theme of day two was split down the middle (much like my scrotum). One thing I’m going to be committing to is a new outlet for ABSOT via video (and you can subscribe to the budding channel here). My mind is already whirling on how this is going to go, but I also recognize I want to slow down and plan it out well first.

Al and me
The other focal point of day two was connection. I spent a lot of time talking and bonding with the cancer advocates who I had met at the pre-conference. Since there were only ten total cancer advocates in the group of 120 advocates, I also spent a decent amount of time connecting with others from other advocacy areas.

I spoke with Al Levin, a mental health advocate about how we can use our experiences as health advocates to conduct research studies, talked with Sabrina Skiles, psoriasis advocate on how we both experience so many misconceptions about our conditions, and learned what schizophrenia is really like (spoiler: nothing like movies and media makes it seem) from a schizophrenia advocate named Rachel Star. Even though we all had different passions and conditions, we all experience many of the same things and could bond over this common link.

After pondering these two separate, yet equally powerful and important lessons, I had a sneaking feeling that day three of HealtheVoices18 would be a third, separate theme - perhaps one of reflection.

Day three of HealtheVoices18


Kyle and me... in the correct position
In the morning of the final day, we heard from Impact Fund recipients, who have done some incredible things, like making their media more accessible or amplifying the underheard voices for their specific advocacy focus with grant money from Janssen. This was followed by a very intense closing message from Kevin Hines, a brain disease advocate. I also got another chance to share my story and mission on the HealtheVoices virtual experience and Facebook Live with another advocate. I’ll never turn down an opportunity to talk balls on camera, and I got to administer my research study survey to the host live, which was super fun, and not that awkward (for me at least)!

As a side note, please consider completing the above mentioned survey, which is embedded just below. It's a total of six questions and part of an extremely important research study I am running about men and testicular exams at the doctor's office. If you don’t have testicles yourself, the direct link to the survey is bit.ly/absotdoctorsurvey, so please pass it on to your sons/husbands/boyfriends/uncles/male dogs/etc. (You can also snag a copy of the graphic here).



Suddenly, Caroline Parvis was back up on stage, telling us that it was time to leave for this year. After hugging some new friends and selfies (including a properly posed picture with Kyle… when you see it, you’ll understand), it was time to board the buses to O’Hare. While it was the shortest day of the conference, it gave me some things to think about, especially while I sat in the airport for three hours waiting for my flight.

My plans for Healthevoices next year


I honestly loved every moment. I’ve attended numerous educational conferences, and this was a new experience. Save for the Ship’s Got Balls event, I’ve never been at a health conference. I’ve said this time and time again, but being in a room full of people with common interests and passions like health advocacy is something that cannot be described. While I would never wish to have cancer, I am thankful to have found a place and a tribe to be with.

Next year, I’ll plan on coming back… even if I’m not accepted (only partially kidding)! I’m pretty sure the conference wouldn’t be the same without having two crazy Uniballers together. I know my life has sure been different since my nuts were separated.

On a serious note, I would like to join the Advisory Board or take on a speaking role during a panel discussion during next year’s conference. I would like to speak about men’s health and how we need to do more with it, which would nicely tie into how to speak about under-discussed or “taboo” topics in general. I could alternatively just run a session on how to effectively craft elaborate ball puns - whatever the people want.

A call to action from HealtheVoices18


I realize this blog post is most applicable for health advocates, and the average reader of ABSOT most likely doesn’t fall into that category. Yet, you’re probably not lacking in a pair of balls (or never had any), and you keep coming back, so health advocacy actually is important to you.

You, as a reader, have the power to help advocates. One of the biggest recurring themes through HealtheVoices18 was how to amplify your voice and grow your audience. This is where you come in.

See a health advocate trying to spread their message of awareness and activism? Help them. Share. Retweet. Tag friends who would benefit from hearing their message. If you know a testicular cancer advocate who is doing an important research study, share the link (hint, hint!)

All of these people work very hard for
health advocacy. Show them your support. 
Many advocates do this as either a labor of love or an unpaid mission on top of a full time job. You wouldn't think twice about sharing a cute cat video or some #foodporn, so don’t hesitate to share a more important and noble message (though cat videos are a true calling).

At times, I personally have felt like my messages are not being heard. Honestly, it hurts. I put a ton of work into something that I feel extremely passionate about, and it is frustrating when a video of a cat doing the dab goes viral over a piece about the importance of April as testicular cancer awareness month.

But I need to remember the message of one of our participants of open mic night. He asked us each to hold up one finger. He said that if you reach just one person, then your mission is worth it. To those advocates that I met at HealtheVoices18 (and the ones I have not had the opportunity to meet yet), continue to do what you do. It is important and your efforts matter.

My final takeaways from HealtheVoices18


On a personal level, I struggled at points throughout HealtheVoices18 because I do not necessarily see myself as a patient advocate and more as a testicular cancer activist. I will never turn down giving support to a testicular cancer patient/survivor if he reaches out to me, but I don’t do a lot of active outreach to those who are diagnosed. The main goal of ABSOT is to promote awareness and conversation around testicular cancer and men's health as a whole.

I was glad to see the support of
United as I entered O'Hare
At times, I felt I was not doing enough because I am not necessarily focused on the needs of the patients and survivors. However, I do still feel that my mission is important, and even though my angle is different, I still had a number of takeaways from HealtheVoices18. Perhaps the biggest one is diving into video production and creation of a dedicated YouTube channel (another shameless plug - subscribe here! More content will be coming over the summer and fall). Upon further reflection, I do plan to have a portion of the YouTube channel geared directly to recently diagnosed and current fighters, with an overall theme of actionable awareness.

To those of you who I met over the the weekend, and especially the program advisors and organizers at Janssen, thank you very much for your continued dedication and work for putting on this conference. I hope to keep in contact with all of you as we help each other to support our missions. This was truly a once-in-a-lifetime experience, but I hope it is just the first time. It's not enough for this to be a one-time thing...

But as I told literally anyone who would listen, it is 100% acceptable to have just one ball.

Disclosure: My travel expenses were paid for by Janssen Global Services, LLC. All thoughts and opinions expressed on social media or this blog are fully my own, honest thoughts, and not reflective of those held by Janssen… Especially the ball jokes. Those are all mine.


Click the ABSOT logo below to subscribe to the mailing list for the new blog posts, latest testicular cancer information, and self exam reminders!


https://aballsysenseoftumor.us18.list-manage.com/subscribe?u=b4883398e11f09a7628a9ac58&id=b967eb48f2

Don't forget to follow and share ABSOT on social media by clicking the icons below!


A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version

1 comment:

  1. So grateful you are raising awareness of TC and life afterwards. Keep on keeping on Justin!!!!

    ReplyDelete