• Waldenström Macroglobulinemia
  • Melanoma
  • Bladder Cancer
  • Brain Cancer
  • Breast Cancer
  • Childhood Cancers
  • Gastric Cancer
  • Gynecologic Cancer
  • Head & Neck Cancer
  • Immunotherapy
  • Kidney Cancer
  • Leukemia
  • Liver Cancer
  • Lung Cancer
  • Lymphoma Cancer
  • Mesothelioma
  • MPN
  • MDS
  • Myeloma
  • Prostate Cancer
  • Rare Cancers
  • Sarcoma
  • Skin Cancer
  • Testicular Cancer
  • Thyroid Cancer

HealtheVoices 2018: Day Three and Beyond


Part three in a three part series about my trip to Chicago for HealtheVoices 2018.

As I woke up on the final day of HeatheVoices18, I couldn't help but reflect on the first two days. After pondering these two separate, yet equally powerful and important days, I had a sneaking feeling that day three of HealtheVoices18 would be a third, separate theme — perhaps one of reflection.

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.

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.

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 have never wished 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)! 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.

I realize this blog post is most applicable for health advocates, and the average reader of may not fall into that category. 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.

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.

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.

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. 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 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 percent 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.

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